That is what I feel like I've been doing since my last post on NHBO....holding on TIGHT! In April, when it was time for me to post, we were in the hospital. In May, when it was time for me to post, we had just come home from the hospital the day before my scheduled post day. Thankfully, Stefanie is very forgiving! :) Of COURSE she is!
Holding on tight... Our whole family has been doing this very thing the last three months. We hold on to God. We hold on to each other. We hold on to hope.
We came home from China with Kevin on March 4th. We knew we would be facing many unknowns, and many doctor appointments with his complex heart condition of situs inversus, single ventricle, large VSD, and pulmonary hypertension. After his heart cath proved that indeed the way God allowed his heart to be formed is quite complicated and extensive, our team of doctors buckled up for many hard conversations and decisions to make about what the best plan would be for Kevin. We buckled up, too.
On April 6, the surgeon implanted a BT shunt, connecting Kevin's aorta to his pulmonary artery. All of Kevin's almost three years of life, he had too much blood flow going through his lungs, causing thickening and hardening of his veins. This shunt would hopefully redirect and reduce the blood flow just enough, but not too much, because we want it to reduce his lung pressures and resistance in his veins. This shunt would also hopefully get his lungs in good shape for his first surgery to repair his heart: the Glenn procedure.
(sidenote: I am by no means an expert on the heart, so I hope and pray I am not butchering the use of these terms!)
While Kevin was still in the ICU, recuperating from his shunt operation, he got a DVT (blood clot) in his left leg. It began to swell, turn purple, and cause him a lot of pain. He immediately began taking blood thinners which improved his condition greatly.
It took Kevin a few days to trust us again in the hospital. I longed to hear him say "mama" again and look us in the eyes. Eventually, he bonded right back to mama.
Kevin was able to come home after only 8 days in the hospital. Other than the Lovenox blood thinning shots that we had to give him in his belly, and the boo-koodles of oral meds he had to take, he recovered from his surgery well. I admit the shots were awful...twice a day, very painful, and having to put our new son (who we were still trying to gain his trust) through this was heart breaking. But, all that aside, he began to play, walk, and laugh again! Amazing!
Two weeks after we came home he had a routine check up at the cardiologist. Surprisingly there was a pericardial effusion around his heart (fluid build-up). He was sent home on high aspirin doses to reduce the fluid. (Also, he was taken off the Lovenox shots!) Two days later we were back at the hospital having an emergency fluid drainage procedure. That was the beginning of an 11 day stay this time.
The fluid came back quickly and Kevin had to have it drained AGAIN during our hospital stay. He contracted a staph infection and had to be given IV antibiotics. Kevin isn't famous for good veins, and eventually his veins that his IV's were in all blew, so they had to finish his round of antibiotics by doing shots of Rocephin in his legs.
Finally they sent us home on Bactrim. Kevin regressed severely after this recent trauma in the hospital. He still felt horrible from the fluid. He shut down. He wouldn't walk. He wouldn't play. He was swollen. For WEEKS. All he wanted to do was sit on the couch and watch TV. He refused to talk to us or his siblings. All he wanted was Mama. Bless his baby heart. It was pitiful.
We called or went back to the doctor at least twice a week because Mama was scared about that fluid coming back. Mama had been present during the emergency drain, and Mama didn't want her Kevin to come that close to the edge of the cliff again. We had lots of echocardiograms done of Kevin's heart in the weeks following the hospital stay.
Three weeks after he had been on Bactrim, he developed a fever and a horrible rash. Back to the E.R. and it turns out he is allergic to sulfa antibiotics. (We were afraid it was Stevens Johnson syndrome, but thankfully it did not progress to that.) The fever persisted for 8 days, and so he was put back in the hospital again to check for infection somewhere else in his system. Praise God this hospital stay was only three days. We are still waiting on results from the blood cultures.
After coming home from the hospital THIS time, Kevin has been a different child! He has played, walked (albeit wobbly!), talked, laughed...oh how wonderful to see him come back to us again.
Kevin will have another heart cath soon to see if his lung pressures and resistance have decreased, and from that we will determine when the best time for his Glenn surgery will be. No, we don't look forward to another surgery or hospital stay. Yes, we want what's best for Kevin! Yes, we struggle with what exactly that is!
So....all this is not to scare you. Though I probably have, and I'm sorry. I mean, it IS scary after all. If you look at all the scary parts.
God just reminds me to look to HIM....not the scary parts. He is in control of the scary parts, by the way. He is in control of the good parts too. What else can we do, but HOLD ON TIGHT? I wouldn't have it any other way. I can honestly say, I would much rather go through hard times, than not have Kevin. I look back at how God brought him into our family, and I cannot deny that he is where God wants him right now. With us.
Seven brothers and sisters who ADORE him, unconditionally.
A daddy who waits patiently on him to bond.
And a mama who is seeing first-hand a broken heart be mended by God...in more ways than one.
Here is the bottom line:
Three months + newly adopted two year old + in and out of the hospital =
HOLDING ON TIGHT!!!!!!!!!!