Happy 2nd Birthday Baby Brandt!

Happy 2nd Birthday Baby Brandt!
Busy as can Be--2 Years Old!

Thursday, December 30, 2010

Heading home take 2. Got sutures+PICC line out, bloodwork+chest xrays are clear, +RSV shots up to date. Praying no recurrence!

Wednesday, December 29, 2010

Two Weeks Post-Infection

Two weeks ago today I was driving from dr. to dr. to try to figure out what was going on with our precious little boy...today he's on the road to recovery. It's been a long two weeks, but also a time filled with blessing. If you google "mediastinitis" you'll see what I mean. Almost every reference to this condition mentions "fatal." And that's the official diagnosis for Brandt's infection. So today I am thankful, again, for the great care here at MUSC, but also nervous. I just love Cathy, one of Dr. Bradley's staff, and she spent a long while with me today discussing some of the causes of infection from surgery. Incidentally, blood transfusions also carry this risk, and Brandt did have one of those right after surgery. The infection percentages here are very low, and they constantly work to eliminate them, but again, it just does happen sometimes. She assured me that they rarely to never see a recurrence of the infection after this cleansing, wound vac, and antibiotic treatment. That being said, the plan is for Brandt to be discharged tomorrow. And I am really ready to go home...but.

Today he had a really fussy day again. He seems to have one good day, then one rough day. Hopefully this is all part of the recovery process. I know that all the antibiotics he's on must bother his stomach. He's not eating well, or sleeping well, and it just feels like he's not quite right yet. He developed a rash on his chest and belly last night, and continues to run a low-grade fever between 99 and 100. But his incision looks great, the antibiotics should be taking care of any residual bacteria, and the doctors feel strongly he's back on track. I am probably just being paranoid...

They have increased his BP meds to the maximum dose because during his time here his BP has continued to run high. Apparently this does happen for single ventricle kids, especially after the bi-directional Glenn surgery. But I also think this medicine bothers his stomach. Tomorrow before he goes home they will do blood work to check his kidney toleration for the high dose of meds and his white blood count one more time. He also has to get his sutures out, have a chest x-ray to double check the fluid that showed up earlier this week, and get his RSV shot. So barring any other developments, we will make it home in time for the New Year!!

Tuesday, December 28, 2010

B is much better 2day...had a rough day yesterday w/100.4 fever+some fluid on his lungs. Incision is still healing well.

Monday, December 27, 2010

Ready to Go

...that is, I am ready to go...as in, definitely ready to be done being at a hospital!! But, we still don't want him to go before HE'S ready. Dr. Bradley still feels the incision looks great, but wants him to stay until he finishes the antibiotic. He slept 5 hours last night, which is great. But, today, he's been REALLY fussy. So I honestly want to be sure he's getting back to his old self before we leave...I just hate being away from the rest of my family, and it's so frustrating when he's miserable and I don't know how to help. I talked to the drs. on rounds about his high irritability, pulling at his incision, rough time sleeping, and lack of appetite. He obliged by screaming and holding his breath and turning purple while they were here. He's running a temp between 100 and 100.4, but again, there's no outward indication that healing is not progressing well.

They did put him back on oxygen sat monitoring, and ordered a chest xray. Apparently he has some slight fluid on his lungs, not enough to be concerned about, but enough that they want to continue his lasix when he goes home. Poor kid also got a suppository prescribed...And nothing else that they can figure out would be causing his discomfort.

The positives...as I've done some research on staph infections following pediatric open heart surgeries...he's actually recovering quite quickly. I'm so thankful for the aggressive and quick treatment from Dr. Bradley and his team here. So please continue to pray for complete healing for Brandt, and for patience and trust for me!!

Sunday, December 26, 2010

No more drain!

Well the snow from home made it all the way to Charleston today! I headed to the hospital early to make sure my Mom could get on the road in good time...Brandt had a good day with minimal fussing and short naps...said goodbye to my menfolk again:-(But I am so thankful for the happy Christmastime we had together, and hopeful to be headed home the end of this week as well.

Dr. Bradley came in later in the afternoon and pulled Brandt's drain. He reports that the healing in the incision still looks good. Brandt certainly didn't enjoy the procedure but I hope he has a more comfortable night with one less tube sticking out of him!

Even before he got his drain out he was back to his happy self today...I continue to marvel at how quickly these little ones heal from such major trauma. I was happy he was able to wear a little outfit on Christmas day, but the sleeves agitated his PICC line, so today we were back to just a diaper. We do NOT want to have to get that PICC line replaced. Dr. Bradley commented on how grabby he is with his incision site...he's all too happy to "help" with his bandage changes.

Saturday, December 25, 2010

Merry Christmas!!

7 mos old--worn out from Christmas excitement.
With monkey Norwood Glenn Fontan III.

Thank you to our wonderful nurses for a Merry MUSC Christmas!

Merry Christmas + Happy 7 mos birthday to Brandt! Had a wonderful time with our family together...so great to celebrate our Saviour's birth and His salvation. After our traditional Christmas story and gift opening -- interspersed with non-traditional hospital life -- we tried to find a place to eat Christmas dinner. We had called a couple places we knew would be open, but didn't think to get reservations, and found "no room in the inn." So after wandering around Charleston for a while, we discovered an open Hardee's. Again, certainly not a traditional Christmas dinner, but one we will never forget!! The nurses were very understanding of the special day and let the boys show off some of their "treasures" including running little Zu Zu mice through the nurses' station.

We also stopped by the ICU to visit some friends there...One of the families had set up Christmas in a box with homemade goodies all around, and even got little gifts for each of the kids+siblings they had met there in the waiting room. They also had a carol sing right in the ICU which we missed, but it really made an impression on me to see their joyful spirits while their little one has struggled on for weeks and weeks in the PCICU with multiple challenges in addition to his heart.

What an outpouring of God's goodness...another family from very near our hometown also got to discharge and go home today--Glenn had gotten a chance to pray with them earlier in the week and we hope to keep in touch with them once we all get home. Dr. Bradley checked Brandt's incision again today and decided to leave the drain in a little longer. While there is not a huge amount of fluid, he said it doesn't hurt to let it keep draining since we're here for observation and antibiotics anyway! We are all for anything that keeps the site clean and sterile... Brandt's white blood count came back as 9, which is fantastic. He slept on and off through the night for my Mom, and seemed to be feeling somewhat better. He sure enjoyed playing with his wrapping paper and new toys!

My dear sweet mother offered to stay one more night at the hospital with Brandt, another huge Christmas blessing for me. She and Glenn and the boys have to head back home tomorrow, so I hope she'll be able to catch up on rest after helping me catch up. The boys are hoping the snow we actually got at home will still be there! It figures, the first white Christmas there in 27 years and we are out of town...I will miss all of them but feel so encouraged by the blessed family time together on this special day of the year.

Friday, December 24, 2010

Christmas Away from Home

But sleep was not to be :-( Brandt had a really rough night, waking up constantly, seeming to be in pain, wanting to be held. I felt so bad for him...knew he HAD to be exhausted. Even his pain meds weren't really helping. The nurses thought it was just because he's old enough to know he's not in his home environment, or that maybe he was teething, but he's generally still very happy even away from home. He did finally sleep 3 or 4 hours in the early morning, and seemed more comfortable as the day progressed.

The day being...Christmas Eve Day! Our older boys had done really well accepting that we had not had time to make plans for a big celebration away from home. They even seem to understand that others here have children more sick than their brother. We opportunity and blessing to let the boys use some of their Christmas money to pick out a gift for one of the very sick babies in PCICU and just include his mother in our Christmas Day plans. So imagine our overwhelming gratitude when we had strangers who had heard we were here come to carol the boys with gifts, stop by our room to pray for Brandt and bring gift cards, and then family and friends reduced me to tears by sending my Mom down with a beautiful little tree and carefully chosen gifts and goodies for us to have a Christmas away from home. Some of our church group also cleaned the house really thoroughly, which will be a huge relief--though somewhat embarrassing given the chaos of the last month--when we get home.

Dr. Bradley came to check Brandt's incision and wanted to leave the drain in...not a huge amount of fluid, but just as a precaution. The incision continues to heal well, which is great news. Since he's been so fussy, they will check his white BC again tomorrow morning just for an internal indication on what may or may not be going on. We don't expect a lot of variation on that, though, given the antibiotics he's on.

I've included a couple pictures of the cozy hospital room decorated with some of this generosity. The boys opened a couple gifts since they were so excited, and then I took my Mom up on her offer to stay with Brandt for the night so I could catch up on some sleep--Glenn had offered as well, but it was nice to be able to get some time with him and the boys together before they had to leave in a couple days. In addition, he and Seth were fighting some sinus drainage that I didn't want to turn into a full-blown cold. Looking forward to a joyful day tomorrow!!

Thursday, December 23, 2010


We spent the first night on recovery uneventfully...Brandt slept pretty well and continued to nurse but still refused the bottle. So Thursday morning after some sleep and getting his meds into him--he has about 10 medicines he's taking by mouth, and had started a trend of throwing them up for the nurses--I tackled the bottle with him.

One of the oral meds he's taking is Nystatin, which is supposed to help prevent thrush forming in his mouth since he's on such strong antibiotics. He's getting Gentamicin through today, which will complete a week of that IV treatment. His Vancomycin will run another week, and as long as he seems to be healing without any recurrence of the infection, Dr. Bradley is hopeful we can go home without the PICC line or anything. But the nurses and I were wondering if his mouth is sore because of these strong IV meds, and that's why he's become adverse to his other oral meds and bottles. Of course the side effects of all these drugs raise huge questions in my mind as to the long-term effects, but when I spoke briefly with some of the cardiologists about them, it seems we really don't have a choice. The pertinent problem right now is the infection, and even if the antibiotics were causing other problems, or will cause them in the long run, we need to use them...

So I gradually introduced some breastmilk in a bottle with one of his favorite nipples from home, and throughout the day, he did accept small amounts from the bottle. He's continued to have good diapers--sorry for all the gory details but it's part of the hospital world, yes they weigh every single one here--as far as urine output, but hasn't had a bowel movement since Sunday. :-( I feel if he can take some formula to supplement the milk I'm making it will help him be able to go to the bathroom. In addition, he'd lost a little weight when they weighed him for admission to the recovery floor, and he's already on the small side.

He was quite happy all day, but not wanting to sleep at ALL. By midafternoon he'd slept only about 45 mins and I thought, well, maybe that would help him have a good long night of rest. When the doctors came to his room for their daily rounds, they said they would do their best to make it as much like he was healing at home as possible. For this I am VERY thankful.. the staff here are so kind and thoughtful for the most part, but this floor is notorious for interrupted sleep at night.

Even though I explained to his night nurse that I really felt like it was important to let him sleep and that I would come get her whenever he woke up to eat, she said I had to wake him up at 11pm to give him meds. So we got vitals then, but she still felt it necessary to shake me awake at 4am after I'd already been up with him several times to remind me it was time for vitals again. I told her I would come get her--as previously discussed--when he woke up, and tried to go back to sleep myself...only to have him wake up at 4:30...grrrr. His IV machine also beeps at high volume whenever it finishes a dose of the medicine, then has to run a flush, then beeps loudly again for the nurse to change it back to the regular heparin flush that keeps his PICC line open.

When I discussed all this with the drs., they said we could do no vitals after 8pm, yay!, take him off the constant monitoring system, and just do spot checks of his BP and saturations. Great news- because trying to untangle him from all those leads and get him out of the bed every time he needs to eat is quite a production. He's still attached to the IV and the drain, but that's a breeze compared to the rest of the wires! Also they said by the time he goes home he may be able to get off all his lasix. He has been on this since birth, so I would be thrilled to reduce the number of meds he has to have on a long-term basis.

So late afternoon he started to get really fussy, then he made a dirty diaper--hooray! He fussed most of the evening, and still had not slept more than 45 mins all day. He seemed very uncomfortable and was crying whenever we moved him, pulling at his incision and grunting when he breathed. I asked the nurse to go ahead and give him some pain meds, and thought surely he would be worn out enough for us both to get a good night's sleep.

Wednesday, December 22, 2010

Wound Vac Out/Drain In

Taking Brandt 2 surgery now. In about an hour should know if he has 2 keep wound vac longer or if dr. can reclose incision.
I rushed to the hospital this morning to sign the disclosures required for Dr. Bradley to take Brandt to the OR...really hoping the wound vac can come out this time. Glenn and the boys got here in time to meet with Dr. Bradley and Jennifer afterward. Everything looks good as far as healing goes. However, he said again that it's just a waiting game to see if the wound heals after closure without further infection forming. Apparently once this bacteria get into the wound, they can't kill it off. He will always test positive for this staph strain. But it's not the highly-resistant strain, so again they are hopeful that the antibiotic treatment and the extra time with the wound vac will enable healing without additional infection growing from the bacteria. After removing the wound vac he closed the incision with special stitches that will have to be removed, instead of the normal inside stitches that would dissolve. He also put in a drain to continue removing fluid from the exterior instead of allowing it to accumulate inside the incision.

He said we would need to be here for at least a week for him to be able to closely monitor the incision. He apologized that it would put us here over Christmas, but in reality, I was expecting that and certainly have no desire to head home and have to turn around and come back...none of the dr. offices will be open over Christmas, and this way Dr. Bradley can do the dressing changes himself and Brandt can get help for pain.

After making sure he came out of anesthesia ok, Brandt was able to move to 8D and his recovery room. The staff there were so sweet and gave us a large room since we'll be here a while!

Tuesday, December 21, 2010

Holding Steady/A Christmas Outing

Well...so much for an early night last night...they called me back to the hospital because Brandt had refused to fall asleep even with a good meal, his Benadryl, and his oxycodone. I knew it would be a long night if he'd already been awake that long, so headed back to feed him around 11. Thanking God for safety driving after so many short nights recently...

Back early in the morning feeling much better...it will be nice to be able to spend the night with him again soon, hopefully! Speaking with the boys about how Paul praised God even in prison--the very best hospital can still feel a little like a prison in some ways--reminds me that even though I REALLY DIDN'T want to be back here right now, and I REALLY DIDN'T want to see Brandt go through all this again, I still have more blessings than I can count.

What a crazy day in the ICU today...the unit was closed to visitors most of the day due to some really long procedures that had to be done right in the ICU. I, however, was in high demand by Brandt's nurse, because he continues to refuse any sort of sustenance other than nursing. She thought surely if he got hungry enough he would go back to the bottle--I'm really surprised as well, because he has done fine with either one since he first learned to eat after his first surgery. Evidently, he's associated the bottle with something bad from this particular visit--we're not sure what.

But I was glad to still be able to see him today--we wondered if the surgeon would get to changing his wound vacuum with all the other long procedures going on. Later in the day his nurse let us know that they were going to hold off on the change again, but that Dr. Bradley wanted to schedule him to go to the OR the next day to check on his healing. If everything looks clean, he'll go ahead and reclose the incision. If not, he'll put a smaller wound vac in. We were glad to hear they could do it all at once instead of doing a change and then having to go in again to decide about closing him. All his other numbers are stable, like BP, and he seems comfortable with minimum pain meds. When Glenn came in to see him after the ICU opened again, he was happy to see his face swelling had receded and Brandt was back to smiling and laughing--this was the first day we felt we had our real Brandt back again...
One of the nurses told us about a holiday light display they thought the boys would really enjoy, so we took a break from the hospital and went to check it out. Great memory--we kept saying how much Brandt would love this next year! The boys liked the Enchanted Forest walking portion and we couldn't believe how many lights there were. They also had a Gingerbread House contest and giant-size Christmas cards...one of which very appropriately matched the boys' attire and choice of SC teams. This time of togetherness really encouraged me--and helped keep me awake to go back and give Brandt his late-night feeding. Even just hearing the Christmas carols made it feel a little more like Christmas week...and seeing a beautiful Nativity display. The wonder of Christmas is truly the miracle that our Wonderful Savior came here as a tiny baby...He was away from "home" for His whole time here on earth...for us!

The guys dropped me back at the hospital and headed back to the house. Brandt's night nurse told me his surgery was scheduled for 10 tomorrow. He couldn't eat after midnight, but he sure ate right up until then! I noticed his little head had some open sores--poor little guy has thrashed his head around so much he's lost all his hair and gotten some bedsores too:-(

Monday, December 20, 2010

Not taking a bottle...

Monday passed rather uneventfully for a baby in ICU...when I called the night nurse she said he'd had a good night, and this time that meant he slept for a couple of uninterrupted periods. I was really glad to hear that, because Sunday he ended up taking only about a 45-min nap all day, plus he'd been refusing food since about noon on Sunday.

They said they would have to start IV fluids and/or a feeding tube if he didn't eat better on Monday--he just flat-out won't take breastmilk or formula from a bottle. They wondered if he would nurse. So I got there as quickly as possible, and sure enough, he was very interested in eating that way. They feel it's probably a comfort thing, which is fine, except that it's not the most convenient method with various tubes and wires still attached, plus I am not sure how much milk I'm actually making. Since they can't measure his fluid intake, they'll monitor his diapers for output and keep an eye on dehydration.

The surgeon covering for Dr. Bradley mentioned changing the wound vacuum today, but decided to wait until tomorrow. We can't seem to get a clear indication of whether or not Dr. Bradley would check it again on Wednesday when he comes back, no matter whether it has been changed on Monday or Tuesday already. My main concern with that is not wanting him to have to go through sedation any more than necessary. We finally learned that in either case, whether today or tomorrow, they would not make the final decision about closing his incision until Dr. Bradley returns.

My big surprise of the day--the "powers that be" at Glenn's job told him to come back to Charleston! I am sooooo relieved and thankful. We felt it was a bad time for him to be away from work, but I honestly get overwhelmed about the silliest little things like trying to get away to the store, or do laundry, or keep everyone updated, while spending as much time as possible with Brandt in ICU. I know he gets good care even if we're not sitting right with him--but the Mom in me doesn't like to leave him. Especially with his needing to eat so much now...my exhaustion level is at an all-time high. And the days stretch on very long when I'm away from my precious fam. So having them here and being able to see them even for short periods does a world of good!
Am hoping to head to bed a little earlier after feeding Brandt and getting him to a sleepy state for the nurses this evening...cheers for a good night's sleep!

Sunday, December 19, 2010

Reaction to Sedation Meds

Saturday evening I'd had a long conversation with the cardiologist on call regarding Brandt's pain and sedation medications. We had not noticed any reaction to them after his first surgery, but of course after his second surgery his face swelled up with severe itching, and even increasingly higher doses of what normally sedates babies--well, even adults, actually, he told us--did not calm Brandt or make him sleep. So they were going to try a toradol regimen, which is like a high-powered ibuprofen by IV, for his main pain control. We already knew he responded well to that since ibuprofen was about the only thing that soothed him a little at home. But he is limited to only a few doses of the IV version as it's bad for the stomach after that time frame. We also asked if there were not anything else that could help calm him better but without the allergic reaction, because he would just thrash around in pain, and they would keep giving him more strong sedation. But they indicated it was still necessary to keep him from pulling out the sutures or wound vac...

The doctors had said he could start his feeds earlier than the normal 6 hours after being extubated since he was breathing so well. We know from experience that a hungry belly makes him MAD and I had hoped that having the tube out for a while and getting some food in him would help calm him more than anything. They agreed, but when we came back to meet his night nurse they still hadn't started feeds!?! She said she "didn't have orders" for that, so we got that remedied quickly and she started the tube feed right away, just a small amount since he'd been having some digestion problems. Who wouldn't after all the starts and stops to surgical procedures, feeds, and anesthesia, poor guy. So during the night he was back to his full feed amounts.

But when I talked to his night nurse this morning, she claimed he'd had an OK night, but still needed several doses of fentanyl and versed, which didn't sound like a good night to me. She said maybe they would try to reduce these meds during the day. We got there as quickly as we could to see him, and when I walked in, I could see he was in great distress. He was banging his head against the side of his crib, flailing his little arms, grabbing at his wound vac, and his eyes were rolling wildly. He wouldn't respond at all to my voice or soothing, and his nurse said she'd be right over to update me on the situation. She said despite repeated increases in the sedation meds, his episodes like this had escalated, and that the cardiologist on call had decided to stop all the sedation meds. They were now concluding that he responds the opposite to these meds as most people would respond. Just like most people get drowsy with Benadryl and a few get wild--Brandt has the opposite reaction to the sedation meds. And they really didn't have anything else they could give him. He had ripped out his feeding tube, so they said I could try a bottle for him as soon as he calmed down enough to take it without aspirating.

The rest of the day my Mom, Glenn, and I spent trying to soothe him and watching him struggle to come out of the effect of the medications. They also had said he could continue a little longer with the Toradol, since he'd had a break from it. So we felt his pain was under control, and each hour that passed he gradually improved. He was still fighting sleep, and we knew he had to be exhausted. He gobbled down 6 oz and his face was still red and swollen. One of his eyes was weepy with allergy-type tears and he just looked pathetic. And the ICU staff certainly aren't used to STOPPING meds to help babies calm down...their whole mindset is to keep the patients calm and comfortable, so this treatmen was a little unusual. But as he continued to improve, it was clear this was what he needed.

The rest of the afternoon and evening he refused any further food. Mom and Glenn had to head home with the boys to be back for work, so we said our goodbyes. I was dreading being away from the family again, but grateful Brandt seemed at least headed in the right direction!
Brandt's sedation meds were making him crazy--after a rough day+nite dr. stopped them+he's finally calm but not sleeping.

Saturday, December 18, 2010

Early Extubation Again! / Wound Vac Change/ Staph Strain

This morning I was so upset with myself because I woke up 10 minutes too late to call and get the night nurse's report on how Brandt had done...so I gave them time for shift change and called and was not pleased when they informed me his nurse was "busy" and couldn't come to the phone. I told Glenn I thought something was wrong, and sure enough, when I called back in 15 mins as they instructed, they told me he had extubated himself again. Even though we warned them about his ingenuity in pulling things out...even though they were giving him extra sedation...even though his arms were restrained. He had thrown his head back and thrashed the vent around with his tongue again. Only this time he had to be reintubated because the vent had to be in for the wound vac change.

I just HATE him having to go through all this again...but they got the tube back in, stopped his feeds again for the vacuum change, and gave him even more sedation. I had been dismayed to learn that his surgeon, Dr. Bradley, would be out of town until Wednesday of next week. Dr. Bradley found Glenn in the waiting room last night and let him know he was going to be gone, but assured Glenn that he had briefed the other surgeon on the plan and that he would be keeping a close eye on everything until Dr. Bradley's return next week.

In the middle of all the commotion with Brandt extubating himself, my Mom was arriving with the boys, and we were SO excited to see them. Also some friends from church got here, and it was great timing because they were able to remind and encourage us that even the change of surgeons, the premature extubation, all of it is for a reason! They brought a sweet sweet card and gift from the church...we have been so surrounded by the love and care of family, friends, and extended church family...we feel blessed with so much prayer support and God's protection and comfort even through a serious and scary infection like this. I mean, I could start a huge list of "What Ifs" that God DIDN'T allow!

So the other surgeon reported after Brandt's wound vac change that everything looked to be healing well and very clean. A good seal had formed around the chest cavity, so they were able to extubate him, which was a WONDERFUL thing--one less tube for him to deal with. He was still on a feeding tube, which was helpful for all the oral medications he is on. Another problem following his Glenn surgery is that he developed a huge adversity to taking all his meds--the only thing I can figure about that is that he got something nasty tasting following the surgery, so at least when he gets those through the feeding tube he doesn't puke them up!

Best as the cardiologists could explain to us, the plan is just to continue to let the antibiotics work and keep the wound vac in until they are sure everything is healing without infection. However, they also admitted that it will be difficult to tell if there will be a recurrence of the infection until the incision is closed again for several days and they can still monitor white blood count etc. His infection is a strain of staph that showed up a day or two after they took the cultures during the wound cleansing on Thursday. He had two obvious areas of infection at the top and bottom of his incision, and Dr. Bradley primarily needed to open the breastbone because these two areas "communicate" with each other to spread the infection the length of the incision and then as it goes deeper, into the chest cavity. In addition to the antibiotic cleansing, he also removed some suspicious tissue and bone areas to be sure everything looked fresh and new. We are so thankful the infection hadn't moved deeply into the bone, chest cavity, or bloodstream, as that would have made his condition and recovery even more serious and widespread. The infection had to have been caused during surgery as it developed too quickly to have gotten in from an outside source...the hospital personnel do everything they can to maintain a sterile environment, but this kind of infection is of course a risk of any surgery. Also as far as they know, it's not a resistant strain. Dr. Bradley will eventually decide how long his course of antibiotics will need to be...I was horrified to hear them mention 4 to 6 weeks, but they quickly assured me he could go home with the PICC line to continue antibiotics at home if the incision is healing and the wound vac can come out.

Friday, December 17, 2010


So when I called early this morning to hear how Brandt's night had been, the nurse let me know she'd found a small hole in the tubing of his IV. Once they changed that out, they felt he was quieting better with the sedation medications. They also let us know that his white blood count had been quite elevated at 20, but had come down to 11 already with the combination of the IV antibiotics and cleaning everything out. This indicated that whatever strain of infection was present, at least it was responding to the treatment.

They also had stopped his feeds again and were going to give more sedation to complete a procedure in the cath lab...needed to place a PICC line in his arm. They explained that high-powered antibiotics given over an extended period of time really do better with this more permanent stable IV in place. The other IVs wear out every couple days and also did not allow for blood draws. They have to check his blood periodically for different numbers, including one indicator of how much antibiotic is actually being absorbed by the body. His number started out a little low, so they were increasing the antibiotic dosage. But the PICC line also would make it so they didn't have to stick him every time they needed to take more blood.

He tolerated the PICC procedure well, but no surprise here, needed a blood transfusion shortly after. Each time he's had any kind of a major procedure his hematocrit has dropped, and they figured this time it was a combination of the wound cleaning, blood draws, and PICC procedure. He continued very uncomfortable with the vent...he has never had a problem breathing over it, and you can't explain to a 7-mos old baby that it's for his good.
So. Apparently. B's IV had a HOLE in it...that's why meds weren't working. Much more sedate now. Trying 2 start tube feeds.

Thursday, December 16, 2010

Highlight/Sedation/Wound Vacuum

Brandt is on very strong sedation meds+running a low fever. Other than longer recovery time drs. are optimistic about healing.

A highlight during all this insanity was the opportunity to get to meet a missionary from our church, Joy Vaughn, whose son Aaron had had surgery for a CHD the day before. I was disappointed not to get to meet her while we were here for Brandt's surgery, so that was a really positive thing that came from our being back in town so unexpectedly. Aaron was actually in the PCICU with Brandt very briefly, and so we met her in the waiting room while we were waiting to hear the outcome of the procedure to clean his wound. One thing about the pediatric heart world at MUSC--it becomes a very small world, and it's a wonderful support system to meet other parents and be able to hold one another up in prayer and celebrate together with recovery and hurt together through difficult news!

We got to go back and see Brandt around 4 or so. The wound vacuum looks as Dr. Bradley described it. They did not give any morphine because of Brandt's reaction to it, but they explained they really needed options other than the fentanyl, versed, and precedex they were giving him to try to keep him quiet. So they were going to give the oxycodone a try again. With benadryl in case he continues to react with the swelling + itching that they are calling a side effect rather than an allergice reaction now. In addition to keeping the vent tube in--we reminded them he had extubated himself within four hours after his last surgery, even with his arms restrained--Dr. Bradley had to use sutures instead of wires to reclose the breastbone. Apparently infection grows back more readily with wires. So the nurses had instructions to keep him heavily sedated and not move him much at all to prevent pulling those sutures out.

The main problem being...the heavy sedations meds--again--weren't really working. He was awake and in pain. But they were hopeful with starting a regimen of pain meds such as toridol (strong IV ibuprofen) along with the sedation that he would be comfortable and not fight the vent too much. Dr. Bradley had told us he cleaned everything out with antibiotics, plus they continued the strong IV antiobiotics, and took a culture of the infection to be able to treat with specific antibiotics for the kind of strain he had developed, rather than just general antibiotics. His white blood count was extremely high, evidence that his body had already been trying to fight off the infection for a while...no wonder the poor little guy had been fussy. The truly amazing thing is how strong he is, and how well his heart is doing, through all of this. Even though the past three days had been terrible from an irritability standpoint, there were times he would quiet in our arms. All of these facts we take as great positives toward his eventual recovery. Joel and Seth finished a last half day of school today, and will hopefully be able to join us in Charleston with Glenn's parents on Saturday.

We talked with the boys briefly and ended up getting a hotel to try to get some sleep. The staff felt that our touching and talking with him at this point would only serve to stimulate him when he needed to be kept quiet. I literally could not think as we were moving our things for the third time that day from the night before, to his room in recovery, to ICU waiting, and back to the car. We should be able to move in to Cross Bridge housing again starting tomorrow, which is truly God's provision given no advance notice or planning this time around.

Infection Update Continued

Brandt's infection is deep+serious.Surgeon reopened chest+added wound vacuum. He'll be intubated@least 1week. PTL he is stable.


Sorry that last post got a little long, but quite a lot happened today. As you can tell from the mobile update I posted (above), it turned out to be a good decision to go to the OR. They actually took Brandt back around 12:15, and both the surgeon and anesthesiologist still felt they would just have to sedate, poke around, and flush the wound with antibiotics. But if they did find anything worse, they would go ahead and open the incision itself and worst case scenario, his whole chest and breastbone area. They said it would probably take an hour or two unless they had to go the anesthesia and surgery route. They asked us to wait in the PCICU waiting area so they could update us, but that they would plan on taking him back to the recovery floor unless it turned out to be something more serious.

So around 1:30 I asked one of the ICU staff to check the status--they hadn't given us a pager or anything since it was expected to be a short procedure. She said they were finishing up, didn't know the status of things, but thought that was a good sign that it had only been an hour and a half. An hour later we heard they had taken him back to ICU...at that point I figured they'd had to do a deeper sedation but still didn't expect at ALL what Dr. Bradley had to tell us when he came out to the waiting room.

He let us know that the infection was deep and what he would call serious. He was very surprised at how far it had progress for a couple reasons. There had been no fever or even outward sign of the infection until Weds morning. Plus he said this kind of infection usually would not develop until 2 to 3 weeks post-surgery. This one was only a week post surgery. He explained they'd had to open up not only the incision but also the breastbone/chest cavity again. He expressed disappointment at this development because he had done so well with the actual heart repair through the Bi-directional Glenn procedure.

By this time I was a little in shock to try to ask what all this meant. But he did warn us recovery can take quite a while. Once infection has gotten into the wound it's much more difficult to get it to heal without further infection, and of course, they have to keep it from spreading to the heart and lungs as well. So he installed something called a wound vacuum into the incision. He told us it looked like a black sponge with a hose attached to literally vacuum all the drainage out of the wound as it heals from the inside out. They will change that every two to three days and check for healing at that time. But I was really dismayed to hear he would have to be back on the vent...our last time with the vent hadn't gone too well because he hates it so much. But he had never had to be on it for long periods of time before. I misunderstood how long he said he'd have to be on the vent...I thought he said at least a week, but the nurse explained it would only have to be until the first vacuum change. The main concern was that even though he's been breathing well on his own, until the tissues started to heal inside and formed a seal around the chest cavity, he could actually take a breath while they were changing the vacuum and damage his lungs or spread any further infection into the chest cavity. Once that area started to heal, they felt he might be able to get off the vent following the first vacuum change on Saturday.

So that news encouraged me a little. We were both kind of reeling from the unexpected serious news, and Glenn was so good to remind me of Ps. 112:7--it came to his mind right away. "He is not afraid of bad news; his heart is firm, trusting in the Lord." That thought really steadied me. We know this is in God's timing...He knows it's Christmas, and that we were looking forward to being home with a happy, healing Brandt to enjoy the time with Joel and Seth being out of school. He knows we hate to see this little baby in pain and unable to help him. He knows how much I despise all these high-powered pain and sedation medications that were unable to calm Brandt on the vent before. And He still knows what is best...

Infection Update

Well I have not had a chance to update anything other than short little summaries since we went home from Charleston Sunday evening. This has definitely been the roughest time for our sweet little boy, which seems crazy after coming through 2 open heart surgeries with flying colors. But he had a great trip home, slept about 6 hours and woke up crying pathetically early Monday morning. Since then it's been a little bit of a nightmare, made bearable by dear friends and family and the knowledge that ALL of this is not a detour in God's plan...it IS His plan.

He's normally not just a good baby, he is an amazingly happy, contented, inquisitive bundle of babbling and giggles. Sunday he was back to that...Monday morning we couldn't recognize him. We couldn't comfort him, he wouldn't even smile for his brothers, who he adores--he would settle for short periods when we fed him and walked him. Glenn was home with me to help us get settled back in and keep up with his med schedule, but when we called Dr. Raunikar's office they wanted to see him right away. He screamed through that whole appointment, where they took chest xrays and an echo....nothing showed up except a lot of gas. Dr. Raunikar and Dr. Stoeber, Brandt's pediatrician, were in agreement that we could start a pretty high dosage of ibuprofen since he was allergic to the other pain meds we would normally bring home. (But he had been off all his pain meds other than Tylenol for over 24 hours before we went home, and was fine.)

Monday night I got him to sleep for just a couple hours at a time in his crib, but had to call my Mom by 5:30 to help me with him because he could not be calmed again, and we needed to get Glenn off to work and the boys off to school. During the day he seemed to get happier again, but we could not put him down in bed at all without him screaming in pain. So Tuesday night Glenn's Mom spent the night to help us get some sleep and he again just had to be held. During this whole time he had no fever, he would eat--mostly to soothe himself, it seemed--he was going to the bathroom, his color and breathing seemed normal other than when he was in obvious pain he would hold his breath and breathe in grunting sounds. In other words, he did not have any of the normal signs of infection they tell you to look for...

I was ready to tear my hair out from listening to him hurt and not being able to do anything. Other than the ibuprofen which seemed to ease his distress a little, we could only hold him and rock him and hope it got better. He just looked at me like, "Mommy, help." The other boys kept asking about Christmas decorations and when was Brandt going to stop crying and start laughing at them again. So many people offered to help, but we were trying to keep him quiet and away from infection, so I didn't know what to ask people to do. We are incredibly blessed with family and friends who have cared and made themselves available for prayer, support and encouragement. You are making a difference!! I feel I need to send a huge disclaimer to everyone that I'm so sorry I haven't kept in better touch, even though we've tried to keep everyone updated as much as possible through various channels.

So Wednesday morning I was nervous about trying to take care of little man by myself but also feeling terrible to keep asking for help...like, it's just a crying baby, I should be able to help him and start getting some other stuff done, too, and it shouldn't be such a big deal. But as I went to change his pjs and diaper, I noticed he had started to claw at his incision with his hands. I got clothes back on him quickly because it wasn't time for the steri strips to come off yet...he continued to try to rip the snaps off. I tried to see if there was drainage or redness but couldn't see anything under the steri strips. I did notice that a lump had formed at the bottom of the incision. By then I was slightly afraid I was hallucinating because he had been crying so long, and he'd been all checked out, and all his heart function was fine, that I called Glenn to be sure that lump hadn't been there before and I just hadn't noticed. He also didn't remember any such lump--I had a pediatrician appt scheduled for that day anyway and figured I could talk to Dr. Stoeber about some different pain med options and have him check out the incision. Since that appt wasn't until later in the afternoon, I went ahead and called Dr. Raunikar as well just to be sure the scratching and clawing and a small lump were a normal part of the healing process.

He was at a different office that day--but I have to say his office does an amazing job of communication and returning messages. He called me back quickly and he was absolutely certain the lump had not been there on Monday when he examined the incision. We agreed that I would keep Brandt's pediatrician appt, and Dr. Stoeber would call Dr. Raunikar after he took a look at it. Dr. Stoeber's office also got me in with no exposure to other patients and he knew right away that fluid was collecting in the lump and called Dr. Raunikar directly. Oh and Brandt was howling throughout this appointment also. Just to give you a feel for the anxiety level here. We weren't sure if a problem was developing whether we would need to get to the cardiologist office or the local ER, but Dr. Raunikar asked that we let one of his associates take a look at it to help us decide where to go for treatment. Across town to the cardiology office...

Dr. Lucas and Dr. Horne both agreed pretty quickly that some kind of infection was setting in. They actually peeled back the steri strips and wow, there it was, drainage and pus. Why hadn't I done that--but all our post-op paperwork said not to take the strips off...certainly I thought if there was drainage it would have shown up around the strips. I had let the advil run out of Brandt's system, and felt like such a mean Mommy but I felt it more accurately reflected how miserable he had been the past 2.5 days, and I also realized it could be masking a fever...he still didn't have one!!! They contacted MUSC and Dr. Bradley was in surgery at the time, but one of his staff agreed with our local cardiology team that we needed to return to Charleston as quickly as possible.

Glenn was on his way home from work but shocked to hear we needed to head back to MUSC. Dr. Horne helped me try to calm Brandt and get the Advil started again but advised he was going to need heavy dosing of antibiotics at the least and a lot more pain meds than advil. I asked a couple times if this could have been causing his discomfort, and now that the infection actually showed up on the surface, they agreed it could definitely cause pain and agitation like we had been experiencing. Dr. Bradley would be able to examine the incision and decide on further treatment and cleansing from there. I truly feel the care that this cardiology team demonstrated just in taking the time for extra communication and attention to detail made a huge difference in diagnosing what certainly was NOT gas and getting him where he needed to be to stop the spread of the infection.

OK, so a four hour trip late at night, the week before Christmas, was not on my agenda for Brandt's recovery process. Apparently we do have a local pediatric surgical team who could have opened the little lump but we really didn't want him to be away from a team who specializes in this kind of development all the time, and who knows our baby and how he SHOULD be responding and healing. I mean, this was only 1 week post-Glenn. Plus Dr. Horne seemed to feel that Dr. Bradley would most likely want to open the incision himself to evaluate the extent of the infection. No problem-- we would drive! And, I hoped, have a quick wound cleansing, a good dose of antibiotics and head back home...

We thank the Lord for safe travel--Melissa from Cross Bridge texted me before I even had a chance to think about where we would stay and worked that out yet again--with no notice. They admitted him back to 8D, the recovery floor, and had to start IVs and take blood. We got there around 9:30, and by 11:45 everything was done except we were still waiting on pain meds to arrive--I finally went out to the nurses' station and asked if they could please give him something. My heart was just breaking at how he must have been feeling...Glenn and I were having to restrain his little hands and nothing was soothing him then.

One of the MUSC cardiologists came and removed more of the steri strips--by this time the whole incision under the steri strips was an angry red. He felt that was a topical skin reaction, but didn't like the fact that it had become hot to the touch. They had stopped his milk also when we got there, in case of surgery the next day, and I had HAD it with him not getting any help with the pain. So they brought some morphine which did not really make me happy because we told them at check-in he'd had an allergic reaction to it...I guess they decided they would try it with benadryl at the same time and monitor any allergic reaction, but that it would relax him the most quickly and that he needed to calm down-- ya THINK? He did fall asleep pretty quickly after that, and then, of course, 5 mins after he was finally asleep, a radiologist got there to take chest xrays.

THEN he could really relax, and he slept a few hours with morphine and benadryl--they got his antibiotics going and monitored vitals during the night, but at that point we were just waiting for Dr. Bradley's say so on what was next. I was thankful to also get a few hours sleep knowing he was finally a little more comfortable.

When Dr. Bradley arrived with Jennifer to take a look at the lump, they were all SO kind and sympathetic that we'd had to come back. But we told him we'd rather be here than anywhere else at this moment. He removed the little knot at the bottom of the incision and poked around at the incision. He indicated it was very early to see any kind of infection before 2 to 3 weeks post-surgery, but did not like the amount of drainage that he continued to be able to squeeze out. He let me know he'd return in a couple hours and go deeper, still on the recovery floor and at Brandt's bedside, but after they'd given him some sedation so he could try to see where the infection was coming from and how deep it ran. He seemed upset to hear that Brandt had been so irritable since Monday--commented on how great his heart repair had gone to this point. The nurses had just given him some more morphine because he was becoming unconsolable again, so the doctors could see how frantically he was grabbing at his chest. But for some reason (she forgot) the nurse didn't give him benadryl with the morphine this time, so yep, you guessed it, his face had started to swell and he was now scratching and clawing at his face AND chest.

But he couldn't have the benadryl they had ordered for him the night before because he wasn't allowed to eat, and they had ordered it by mouth, not by IV...grrr. We asked the nurse to order IV Benadryl as soon as possible, and while we were waiting for Dr. Bradley to come back we got a message from Cathy, his assistant, that he had changed his mind and was going to take Brandt to the OR to more fully sedate him and be ready in case he did have to open the whole incision or chest. But she still seemed confident that this was just a precaution and to make Brandt more comfortable...it's obviously a much more sterile environment, so I was glad to hear they could just look at it and clean it all at once.
Taking B to OR @ 10:30 to decide if they have to open incision and/or chest. Can't tell for sure where infection's coming from.

Wednesday, December 15, 2010

3 days of this! And they thought it was gas!!!

sweet baby was frantic by the time we got here to MUSC. Starting antibio/pain meds by IV. 2moro Dr. Bradley decides about surgery.
Brandt has an infection. We are headed back to MUSC. Please pray.

Sunday, December 12, 2010

Headed home 5pm. Back and forth all day about whether he would be discharged but we are ON the ROAD now!

Saturday, December 11, 2010

Pleasant Surprise

Well as you can see from my "short" updates, after several discussions with the drs. and Brandt's nurse about the sedation meds, he was finally able to get rid of them completely this morning! Last night when we got back in to see him, he was doing well without the RA line and his BP had remained at a good level. However, the precedex was still at an increased amount, and we really didn't understand why that should be necessary. He was also still really grouchy whenever he woke up...we'd already asked them if we could limit the morphine since he seemed to be having an allergic reaction to it. So the only time they gave him that was for Dr. Bradley to get the RA line out...but his face was still swollen and itchy.

Glenn had asked one of the head drs in the ICU unit about the precedex, and he basically just said, "He still needs it." I was feeling frustrated that he was on a sedation med that was NOT sedating him, and this same dr. at one point told Glenn not to touch or stimulate Brandt again, like that was causing his BP to fluctuate. Then he watched as Brandt got mad and the BP rocketed to over 140 until Glenn finally grabbed a bottle and gave it to him--he's still been eating almost double since the surgery than before it--and he calmed right down and his BP went down again as well. Then the dr. acknowledged that Glenn seemed to know what would help Brandt, but still said he needed the precedex. But when I asked the nurse WHY they felt he still needed it she said in addition to being a sedative it had qualities that helped keep BP low, even though it's not a BP med. But she said he had to be off of it before he could move to recovery, and that they would not even try to wean it until the next day!

So when I called early this morning, his nurse said she had GREAT news. Dr. Bradley had come by at 5am (WHEN does he sleep??) and taken out the chest drainage tube. Also a different doctor had not just reduced the precedex but stopped it and Brandt's BP was suddenly stable. And that as soon as they had a bed ready he could move to recovery! What a turnaround...we certainly felt justified in our concern about that particular medication. I woke Glenn up and said "Let's go hold our boy!" (We hadn't been able to hold him after the RA line was removed because they were still concerned about the BP fluctuations.) We were so thankful and excited, and I wondered if many had been praying for him last night.

When we got to the hospital, we found our real little Brandt. The nurses couldn't believe how happy he was and he'd been entertaining them with smiling and talking, just like his normal self. Previously, Glenn had only been able to coax one little half a smile...again a result of the sedation stuff, I think. We got moved to recovery (now 8D instead of 7C) and just enjoyed getting to hold him. At this point he still needs a discharge xray and echocardiogram, but as long as everything stays stable, we should be headed home in the near future!!
We also had opportunity last night to meet a family whose little 8-wk old had just been transferred here to try to improve his heart function. He had multiple failings of his bodily structure and function, but they were hopeful he could be treated. We got to pray with them, and shortly after that, his mom received the devestating news that they couldn't do anything further for him. She was in shock, but her whole family had come this morning to say goodbye to their son and brother. We felt at a loss to adequately comfort or sympathize, especially as we were rejoicing in God's goodness to grant healing to Brandt. Would we do the same if God granted Brandt an early homecoming to Heaven? But Glenn was able to take some of the older kids up to the Atrium and rejoice with the family that their little one is pain free...he listened, he prayed with them, he cried with them. We just continue to hold them in prayer before the One who can offer the true comfort where our words fall far short.

Around 11:30 Brandt started with some loud crying and wouldn't be consoled with a bottle or nursing or being held. We thought it might be pain but that seemed unlikely since he'd been doing so well on just Tylenol throughout the day. Then he threw up and finally one of the nurses came in and draped him over her arm, which seemed to calm him. The general consensus is that it was gas rather than pain, and we'll see how he does through the night.
Dr. Bradley took out chest tube+arterial lines @ 5am this morning!! Also reduced meds, BP stayed stable!We r going 2 recovery yay!

Friday, December 10, 2010

Brandt got his RA line out 2nite! He's off one BP med but had to increase his sedation meds. Not sure when he can go to recovery

Morphine Reaction

Well I had really been hoping that Brandt would be "back" before we left last night. Even when we're pleased that he's doing so well, I don't like seeing him with his little arms strapped down and no smile from our ALWAYS happy little Super B. We had to leave early last night because they were doing a procedure in the ICU and we didn't know when we could get back in to see him. Glenn knew I've been short on sleep and insisted we head back to the house where we're staying...

By the way, we are SO THANKFUL again for the amazing housing provided by Cross Bridge. It is just a huge blessing to be able to leave the hospital and go to a comfortable safe place for rest.

When I called early in the morning to check on him, I was happy to hear he'd been able to get off his oxygen. His day shift nurse had said the night shift nurse would be working on weaning the BP and sedation meds, but again they were not able to do that because his numbers just would not allow it. She commented again on how agitated he got every time he wanted to eat...this seems to be a continuing theme for him. But they also thought he was having an allergic reaction to the morphine he's on...terrible itching. They gave him Benadryl, but the night before I had already been asking if it was not possible that some of these many meds could be causing an adverse reaction resulting in the agitation. They said there would be some other kind of sign, such as hives, if that were true. But I mean, versed, precedex, morpheine, oxycodone--just to name a few, it does make you wonder.

So when we got here this morning and I saw his little face all swollen and red, I felt so terrible for him. We spoke with his nurse and head of the ICU about changing out at least the morphine for some other kind of pain meds, and they agreed to make some adjustments. Gradually the swelling has come down today...his drainage is still average. It was great to have all the tubes and monitors off his face. Dr. Bradley agreed to take out his RA line late this afternoon. They also started him back on his oral BP meds to see if that would even out the BP numbers to get him off the IV BP meds. Around noon he came off those, and he's had some ups and downs with BP since then. We have had to be out of the ICU for the past couple hours due to procedures and new cases coming in--they've asked the families to leave. We're anxious to see if the RA line is indeed out and confirm his BP numbers have stayed stable...he may be able to go to the recovery floor tomorrow if he has a good night!

Thursday, December 9, 2010

Not much change for Brandt tonight. Still working to keep BP down+he still needs sedation+pain meds. We miss our happy little guy.

Day 1 Post Bi-Directional Glenn

We got to the PCICU after getting Brandt's night report to find that he was still being sedated pretty heavily. We asked if we were able to talk to him and touch him, and they said love on him all we wanted. He would stir and open his eyes but was still completely out of it, with his eyes all glazed over. He was much calmer, but getting very mad every time he woke up, wanting to eat and not liking his restraints too much at all. I was pleased to be able to help feed him, though it was a little nerve-racking to have to sit him up for burping--I always love setting off all the monitor alarms one day after an open heart surgery:-( But whenever he gets agitated, his blood pressure numbers start up again, and that was the main thing they were watching, and wanting to start to reduce his IV nipride, a BP med that needed to be weaned. They also wanted to reduce the precedex for sedation but were not able to start on that due to his agitation...since he'd pulled his vent tube, they didn't have to worry about that weaning process.

His oxygen saturations were very good, and he was on just a little bit of oxygen. They were pleased he was eating so well, in fact, we found out very quickly that with FOOD being the main way to calm him, he's actually eating about twice as much as he was before the surgery. We may be taking home a chunky little monkey!
Brandt had a good night and ate well. They're still sedating to control BP and also giving blood -his count was low this morning.

Wednesday, December 8, 2010


Thanks for praying. Brandt is stable again. His BP+temp were too high and they had to restrain him. A different sedation med helped calm him and he is breathing on his own. At this point they don't plan to reintubate him but want to make sure his BP stays stable and he doesn't pull his own chest tube!

Brandt decides to extubate himself!

Feisty B just extubated himself. If he breathes ok they'll leave it. If not they'll have 2 put him under again. BP is too high.
I posted this from my phone after we got back from supper and tried to go in to see Brandt again. Glenn's family was leaving to head home, and we were hurrying back to ICU to get the report from Brandt's nurse before she left for shift change. When we left him before supper, he had been restless and the pain and sedation drugs weren't preventing his discomfort or squirming. His nurse was trying different combinations that would allow him to come out of the anesthesia and be alert enough to continue breathing over the vent but prevent pain and too much movement. They had also restrained one of his arms.

So imagine our shock when we got to ICU and they would not let us in. The cardiologist on duty appeared at the door, which kind of scared us but he let us know very quickly that things were under control. However, just a few minutes previously Brandt had gotten really upset and pulled his tube out! I wasn't quite sure which tube they were referring to so we quickly clarified, "You mean he EXTUBATED himself?!?" And he agreed that indeed, Brandt had pulled the breathing tube out on his own. Apparently, from what his nurse told us, he had continued restless and she had restrained both arms, so he reared his little head back and used his tongue to push the tube out of place. He was breathing ok at that point, but they were concerned because they had just given him a big dose of pain medicine in addition to the anesthesia still in him. Plus they would normally clean up all his secretions and do c-pap trials to make sure he was ok to breath on his own before attempting to extubate!

So they told us it would be about 10 or 15 mins before we heard anything. 30 to 45 mins later I went back to the ICU to find out why we hadn't heard anything, and they were having a really rough time getting him calmed down. He was still breathing ok, but his blood pressure had gone through the roof, so the nurse let us know they would be starting an IV sedation drug called precedex on top of the other pain and calming meds they were already giving him. Because he was flailing around so much, they also had to restrain his arms and legs as they were concerned he could pull out his chest drainage tube or lines going to his heart. They said we could come in and see him after an hour as long as we didn't talk or touch him since our voices could easily rile him up again. The biggest challenge was to calm him without putting him out so much that he couldn't breath on his own and they would have to reintubate him.

We were very concerned at this point--as many people commented to us, "He's a fighter!" His nurse was pretty upset that he had done that "on her watch," but we had seen how closely she was monitoring everything and of course didn't mind him being off the vent early as long as he hadn't injured anything or slowed his other recovery. I told her his cardiologist at home said he has a sassy attitude but she said that would have to be sassy to the second degree! She also let us know he would have a nurse all to himself through the night, so that was encouraging.

She was finishing her shift and we thought it was really nice she came to see us before she left for the evening and let us know they had finally gotten him calmed down. We were so relieved to hear that, and then when we could get in to see him again, he was stabilized again. We didn't stay much later after that since they really didn't want talking around him, but his night nurse reassured us that she would call if he had any change for the worse.
so Brandt is fighting the vent and waking up too soon. He's hurting and it's hard to see him in pain. Plz pray 4 rest+relief.

The pictures below show quite a few tubes and wires...just in case that bothers you, don't keep scrolling.

Seeing Our Boy

We met with Dr. Bradley and his team after the surgery, and everything went very well. He said there were no surprises, and the bleeding was to be expected for this surgery. Everything is stable, and they even laughed and joked a little, said he's still as cute as ever, and that's unusual, especially for the surgeon. Those of you who have met Dr. Bradley know you won't even get a smile unless he's very confident of results and stability...

Then we got to go in for a short visit with our sweet boy. While it's not pleasant to see him with all the tubes and monitors again, we were prepared from the last surgery, and did not feel the swelling looked awful. He of course has some swelling and drainage, but the nurse told us it's minimal. Please continue to pray that doesn't change. The nurse seemed particularly pleased that she had already been able to reduce some of the high-powered drugs, although she'd had to start some morphine as he was showing signs of pain already. This is also expected after this surgery, but we just hope that can also be kept at a minimum as he wakes up. He will probably sleep until late night or early tomorrow, and I'll try to post any big changes as we get them. We are just rejoicing and thankful for God's hand of healing to this point!
He's back in ICU!! We are thrilled and thankful!
Brandt just came off heart lung bypass! All is still going well and they are working on bleeding now. Still about an hour to go.
2nd update...on heart+lung bypass machine. Working away, Brandt continues stable.
1st update from OR: All going well, Brandt is very stable, they are getting thru scar tissue par for the course.


Our little man is in surgery as I write...we got here at 5:30 and they took him back around 6:45. He was ready probably a half hour before that but just as we handed him over the first time, they got word that the OR air conditioning and heating units had malfunctioned. Not good for trying to maintain proper body temps for the paralysis and heart and lung machine, I'm sure:-( But they got everything working, and we expect our first update within the next hour. Brandt was really happy when we woke him up this morning, but started getting mad on the drive here because we had neglected to feed him. This got progressively worse to the point that I couldn't hold him because he would start crying...Glenn was able to calm him better. Apparently my mother's touch did no good since he was associating me only with breakfast:-(

I truly feel very calm about everything today, but did keep waking up last night. Glenn had a rough time handing him over to the nurse this morning. But God kept bringing to mind His promise that "the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." Glenn and I were talking about how different circumstances in our lives really cause these truths to solidify in our hearts and minds. Often we've heard them, read them, memorized them for years and years...he's been just saying Psalm 23 as hearing the risks for a surgery like this truly reflect the "valley of the shadow of death." Yet we fear no evil, because our God gives comfort, and He works each valley for our good and His glory.

Certainly, people all over have let us know they are bringing "prayer and supplication with thanksgiving" for Brandt to the Great Healer today. Glenn was able to pray again with Dr. Bradley last night, and we are so thankful for how God has already answered these requests...He's used Brandt in our lives, and know He will continue to work through this little miracle. Thank you to all of you who have shared in this, and we'll continue to send updates through the day.

Tuesday, December 7, 2010

Pre-op Tests/Meetings at MUSC

Brandt and his beautiful heart friend, Evie.
Evie got discharged from her second surgery the night before Brandt had his!

Ok it is now officially a VERY long day...just got done @ MUSC. Have to be here @ 5:30am 2moro...and doctors and medical staff do this all the time! Glenn and I were marvelling because we know Dr. Bradley's operating day often starts before dawn, and when we were waiting at the end of the day today it was for him to get out of the operating room. Then he met with us to discuss the surgery, and after we packed up and left he was still meeting with other parents. We did tell him and his assistants we hoped they could get good sleep tonight!!!

Even though the day was long, it was really good time with Brandt. He was laughing and playing despite the fact that almost every time he fell asleep, it was time for another test. They did an EKG, chest xrays, echocardiogram, and bloodwork. We spoke with anesthesiologists, two of the cardiologists who will be on duty in the PCICU, and two of Dr. Bradley's assistants. It's encouraging to have gotten to know so much of this team, and feel they really care about Brandt and know his medical condition and progress so well. We even had some good-natured teasing with Dr. Bradley about the fact that Brandt had on one of his Ohio State outfits and Dr. Bradley did part of his schooling at Michigan.

Cathy, one of his medical assistants had some great input about Brandt's development and couldn't believe he was the "starving" baby they sent home. She feels his fine motor skills are advanced while he might be struggling a little with gross motor skills such as sitting up...but that he's not severely behind. All of the doctors reassured us that this surgery definitely poses fewer risks than the first, and Dr. Bradley estimates only a 5 to 7 day hospital stay, which would be great! (When we were on our way back to the house where we were staying, we got a call from Evie's parents saying she had been discharged today!! She was in the hospital only 5 days and is doing really well.)

The doctors also explained that the pain expected from this surgery involves the changing blood pressures to the upper portion of the body, and more swelling than the first surgery. They don't know for sure that this causes headaches to different degrees of severity, but they suspect so. They said his little soft spot on the top of his head will even be swollen. Drainage can also be a problem during recovery...but the net result of taking out the shunt they put in and connecting the superior vena cava directly to the pulmonary artery of the heart is a decreased work load on his heart. His oxygen saturations won't actually improve much until after the third surgery. But he should have more energy and they think the babies grow better as well, although this is not a documented fact. One interesting thing about this repair is that since they use heart tissue that is already there, and are able to remove the gortex shunt, this repair grows with baby. We continue in awe that God has given such skill and knowledge to medical science today for these operations' strong success rates.
Brandt's pre-op tests are all done, just waiting to meet with doctors now. Everything looks good for surgery tomorrow.
We are @ MUSC for a full day of pre-op tests. Will also be meeting with cardio/surgical teams. So far everything's a go 4 tomorro

Friday, December 3, 2010

Dedication/Extra Surgery Info

Brandt with Nannie+Pa

We were so happy it worked out for Brandt to have his church baby dedication service this past Sunday, just before going in to have his next surgery. Acknowledging that our children are God's gifts and praying for Him to use them really helps put life's challenges in perspective... Brandt was of course oblivious to this momentous event, other than being fascinated with his new surroundings and determined to check out the guitarist standing behind Glenn. Oh and removing his hat (pictured above). Since we've really tried to keep him away from crowds and kids as much as possible recently to avoid germs, his brief time in the service probably seemed like an adventure to him. Glenn's Mom got him a cute little outfit for his special day, which was a good thing since I am not the world's greatest shopper and had not even thought ahead enough to plan such details!

He's been really cuddly and tired this week...no complaints from me on the cuddly part as I treasure the time holding and playing with him before he's back in ICU. Such mixed feelings as we dread seeing him go through this again, but actually look forward to being through this stage of repair and hope it gives him more energy and stability for his heart's development. A couple things the cardiologist who did his heart cath told us were encouraging...they will be able to close up his chest before he comes out of surgery this time. Also she explained that the amount of time in surgery will be comparable to the 1st surgery, but it's a less complicated procedure. For the most part Dr. Bradley will have to spend less time actually working on his heart, but it may take them a little longer to prep him and get him closed up because of scar tissue etc from the Norwood surgery. Does anyone else find it confusing, by the way, that the name of the second surgery is exactly the same as my husband's name?!? Anyway, here's a link again that gives a broad explanation of the bi-directional Glenn repair:
We'll be headed to Charleston Monday evening as he has to be at MUSC by 9am Tuesday morning for pre-op testing estimated to take about 6 hours. We will also be able to meet with the cardiology team during this time, so please continue to pray for wisdom for the doctors and for Brandt to stay healthy through the next couple days.

Big Surgery Week

Please pray for several of Brandt's little heart friends today and through the coming week if you happen to read this update. Evie went into surgery around 6:30 this morning for her bi-directional Glenn, the same procedure Brandt will have next week. Kaelyn is also currently in pre-op for her Glenn this coming Monday. Brandt's pre-op will be on Tuesday, surgery on Wednesday, and little Vance has surgery on Thursday! They are all just in my thoughts and prayers so much today, as Brandt's surgery looms close. We thank God for the skill He's given the doctors, and the healing He's granted these precious little ones that He loves so much more than we can even begin to imagine.

Thursday, November 25, 2010

Happy Thanksgiving + Happy 6-month birthday to our little miracle baby!!

Saturday, November 20, 2010

Home again--early!

Well Brandt continues to keep us hopping by exceeding expectations...almost as soon as I had completed my update regarding what they hoped to accomplish with the heart cath, one of the nurses showed up in the waiting room. They had told us they would page us once Brandt was awake, but she had already gone down to another floor where I'd had to store milk for Brandt. She asked us to hurry and come help her know how to warm the milk because he came back from the procedure already awake and wanted nothing to do with the pedialyte they'd offered him...that's our boy!

We had the best news possible as they found the pressures in his arteries to be very low, which means he's ready for the increased pressures from surgery number two. Also the arteries and shunt all continue to have a clear flow, which the cardiologist performing the cath indicated will contribute to a smooth Glenn procedure as well. So this is another hurdle we are through, and just praising God for continuing to heal this sweet boy.

They kept him for observation 'til around 3:30, and the biggest challenge was keeping him still for two hours to prevent bleeding. He finally slept a little and ate a little, but was really exhausted and slept for 12 hours once we got him back to the house where we were staying in Charleston. We had prepared to spend a couple days there just in case he had to be admitted, but after getting together with some dear friends for lunch on Friday, we headed home and are happy to be back with our whole family. Next stop...surgery #2!

Thursday, November 18, 2010

Brandt got done early--around 10:45--woke up and wanted 2 eat! All is well+sats look good for surgery Dec 8. In recovery now...

Heart Cath Today

We are @ MUSC for Brandt's heart cath...will probably not know results for 4 to 5 hours.

We got in to Charleston late last night. Brandt was NOT a happy camper on the trip here, and wanted to eat right up until his midnight deadline last night. But he was back to his happy self this morning until about 7:15 when he started to howl for food. Glenn actually did a better job holding him--since he thinks Mommy means food--until they took him back for anesthesia around 7:45 or so. The dr and anesthesiologists explained he would have general anesthesia and be on a vent during the procedure...I was thinking he got to have more sedation for this kind of testing, but it's always reassuring to talk with the excellent staff here regarding their procedures, since they have it down to such a science.

So they completed an echo and then will inject dye to take movies and detailed pressure readings which can confirm he's ready for the second surgery. The heart cath should take about 3 to 4 hours and then they will observe him four to six hours to make sure he recovers without bleeding or problems eating. As long as they don't encounter anything unexpected he shouldn't have to spend the night. I guess sometimes they find narrowing that they can fix with a balloon, in which case they will keep him longer.

10:30am We heard from the cath lab they have completed the echo under sedation, gained access and are working on the cath and saturation readings...

Wednesday, November 10, 2010

"Blue" Week

Just want to let everyone know that Brandt has had several "blue" episodes and more difficulty than usual with breathing this past week. We thought this was mostly from a head cold and some very minor congestion, but when we went for his RSV shots his sats had dropped down to the 70s. His oxygen had been running in the low 90s, which was very good. The pulmonary dr. gave him some oxygen for a short time and paged Brandt's cardiologist, who was able to come take a look at him.
He explained any kind of change for a baby with limited oxygen saturations can cause dips like this, and agreed that the head congestion is affecting his breathing. His sats came back up, and since that time have just been fluctuating up and down. We had a follow-up appointment on Monday to make sure no further treatment is needed before his heart cath in Charleston, and his shunt and lungs remain clear. Dr. Raunikar feels that these "blue episodes" are indicative that he is outgrowing the first surgery and that we are right on track for the heart cath next week. In a way, this development is encouraging because when he was doing so well and staying so stable, it's really hard to feel that he's ready for that next surgery. Now, while we still dread what he will go through in the next few weeks, we are SO THANKFUL that the time is close to go forward with the next repair.
Here's a link with a very concise explanation of the repairs for hypoplastic left heart syndrome, if you'd like to understand a little of what Dr. Bradley will be doing for Brandt during the bi-directional Glenn procedure...

Sunday, October 17, 2010

Next Surgery Date

Hello all: just wanted to let everyone know we have a date for Brandt's next surgery--it will be December 8th, contingent on continued stability of his heart and lung stats, and the results of the hearth catheterization. The heart cath will be November 18 in Charleston, and I will plan to post results from that but probably not much else between now and then. We plan to enjoy every minute of holding and cuddling this little fellow as much as possible between now and then. We also plan to restrict his outings from the house due to the high risk involved during this flu season. In addition to his other regularly scheduled appointments I'm hassling with pulmonologist, insurance, pediatrician, and pharmacy departments to get his RSV shots scheduled--once a month throughout the flu season. This virus can be fatal to babies in general, but in particular to those with weakened heart and/or lung conditions. So our blessings and challenges continue, but without much change from week to week right now...we so appreciate everyone's continued prayer for this amazing little guy, and I will start the updates again when we have something more to report!

Wednesday, October 6, 2010

Scheduling Second Open Heart Surgery

Lovin' the Fall Sunshine!
What a weekend...week, whatever. In addition to Seth's surgery, Joel managed to scratch or cut his eye somehow. By Sunday I was going crazy from doling out meds and trying to encourage crying children. Glenn was very kind to watch all three of the invalids while I went to church, which was a big lift to my spirits.
I was hopeful Joel's eye was better, but Monday morning he was still having trouble opening it. I knew it would be a challenge to get him to the doctor and still be ready to take Brandt to the cardiologist. But I must say a huge hoorah for family...both my mom and Glenn's family are always so ready to help, and so after Joel's appointment and finding out his eye was most likely bruised and possibly lacerated, I dropped him at Glenn's parents and then picked Glenn up to head to the cardiologist office together.

Dr. Raunikar and his staff are just amazing...he took quite a bit of time going over different options and scenarios with us. Of course there are no guarantees in life, ever, and certainly not when dealing with half a heart being repaired to function as a single ventricle. But all in all, Brandt's condition is above average as his oxygen saturations and blood pressures continue stable. His echocardiogram did not show any change in the valve leakage, and so contingent on his heart catheterization results in November, Dr. Raunikar has requested a surgery date in early December for the bi-directional Glenn procedure. This will remove the shunt and create a direct path from for oxygenated blood to travel to the lungs from Brandt's pulmonary artery, if I'm understanding correctly. The heart cath will show if his lungs are developed/mature enough to support the new circulation without the current shunt. As far as growth, Brandt also stayed exactly at the 5th%, although Dr. Raunikar wants to me to continue to supplement his diet with formula whenever he's taking a bottle--it certainly won't hurt him and as before, we don't want him to be verging on underweight as he faces his next surgery.

While I know I expressed frustration to more than one person this past week about being sick of doctor visits, the flip side of that is we are so thankful for the amazing medical care available to us here, and doctors who genuinely care and work to help us make the best decisions for Brandt and our family!!

Thursday, September 30, 2010

Pediatric Visit/Seth Surgery

Well Brandt endured another round of immunizations this week. Weight was 11lb 10oz @ the pediatrician's, but he'd had a rough day of projectiles right before, and is still tracking consistently, so his doctor was fine with that. We also discussed the options for physical therapy, and while he can see some of the muscle tone issues the doctor in Charleston pointed out, he feels it's normal lag for what he's been through. We're going to hold off on any more (PT) appointments for a couple months and see how he's doing by his 6-mos check. They were not able to give him the vaccine for RSV as I thought they had said they could, but hopefully we can get that scheduled with his next cardiologist appointment since that's yet another medical office we'll have to visit once a month throughout the winter/flu months.

Seth was scheduled to have a skin and gum graft completed today on top of everything else going on right now. He had a tooth with an exposed root that had already begun some bone erosion. The doctor was going to at least clip the frenulum so the gum would not pull away any further. He was not sure how Seth would do for him to take the gum from the roof of his mouth and graft it at this age, since he's too young for general anesthesia. But he did want to prevent any further bone erosion and it had to be done before he could get braces, in any case, so I was thrilled that Seth did AMAZING to sit still and quietly enough for them to finish the whole procedure. Now we'll have the fun job of keeping him quiet for two more weeks, ha! Those of you who know Seth realize that his name is an antonym of quiet:-) But he's definitely growing up, and I was thankful to be able to watch the procedure and better understand what the doctor was trying to accomplish. I never thought I had the stomach for this kind of stuff, but love for your child can really be a great motivator...we have certainly seen that more than once this year!

Sunday, September 26, 2010

4 months old!

Laughing during diaper change
Amazing to think that 4 short months ago, no four LONG months ago--take your pick--we were awaiting little Brandt's arrival. Both with great anticipation and trepidation. And he is such a precious addition to our family life, what a little love. We all vie to get his smiles and laughs. Anyway, he's had a great week with probably the least amount of reflux since we brought him home, so encouraging. He weighed in at the cardiologist 11lbs 8 oz, so he's put on over a pound since his last cardiology appointment. This was also our shortest visit yet, as everything continues stable...next week is 4 mos pediatric appt and he will start his RSV vaccine regimen. These additional shots are highly recommended for any babies with heart or lung problems, and he'll have to have 1 per month through probably March of next year.