I have failed to blog in the last two months. We spent Thanksgiving in Houston as Samuel faced his pacemaker placement, bubble study and the possible ASD closure. I was glad that Jason, the girls and Max were all able to be with us for this trip. We all had a day together in Houston after Sam's preop appts and I felt this overwhelming joy.. when I watch them playing together, I can't help but know they may not always have this. They may not always have each other. It is an impossibly hard part of our reality but somehow when they are all together and bonding, I forget that ugly thought. We went to the natural science museum before we settled in at the RMH to help Sam rest up for the big day ahead. Sam had a rough night (as always on trips) but what was the hardest part was how cold the weather was that week. Getting to the hospital at the crack of dawn the next morning is no easy feat with babies, equipment in frozen, rainy weather. This Florida girl was shocked by the 20 degree front that came through Texas. I know, my snowbird relatives are laughing at me.. but we really don't even know how to dress for that kind of cold down here!
So Sammy was supposed to go in as outpatient but we pretty much knew that he would become inpatient just based on how he likes to handle stress and anesthesia every time. Luckily, the team at this hospital really knows how to handle Mito kids and their anesthesia protocols are fine-tuned with good management. Sam was so precious that morning as I sent him off to the Cath Lab. He kissed me hard and asked me, "Mommy, can you go in there with me?" and all I could say to him was that God would be in there with him. This just never gets any easier.
So Jason took the kids home as they were unruly and all over the waiting room. I sat there waiting for word and was so thankful when one by one each of the physicians and nurses involved called or stepped out with status. An hour or two into the procedures we found out news I was not expecting. We were having a bubble study done since they wanted to make sure the small hole (PFO/ ASD) we knew he had between two chambers of his heart was not going to be a problem for passing clots etc. So they ran bubbles up through one femoral line while a intra-cardiac echo that was in through the other femoral line could monitor the physiology and function of his heart. Then a cerebral Doppler was placed on his head that monitored the circulatory flow through to his brain. The bubbles that they inserted went across the ASD and apparently it indicated a severe shunt in the right to left direction which is in reverse of the usual flow. This meant, that the closure was indeed indicated. The Doppler on his brain actually also showed the bubbles went directly there as well which for me raised all kinds of questions and concerns. We are very lucky this little man has never stroked out. I sure hope the times when one side of his face was doing seizure-like chewing motions in the past.. hope that what we were seeing was not part of this issue. I am just not sure and don't really have the medical knowledge to connect all the dots that emotionally you worry about when you get this kind of news.
At least we knew the ASD closure was necessary, as we hated to have one more thing implanted in his little body. They put in a Helix Device to close the hole which is like opening a small umbrella on each side of the hole. Then they proceeded to go in through his shoulder to place the pacemaker lead to the right ventricle and the generator under the muscle. The cardiologist was wonderful as well as the anesthesiologist. They came out and said he was having a bit more trouble being extubated right-away as his airway is incredibly scarred and narrow. He had a seizure during the 6 hours as well. When he came out, the biggest issue was keeping him still as he was in a lot of pain and wanted to move his legs which needed to remain still for the next 6-8 hours. This was incredibly difficult to manage as he is only 3, after all and wants to move when he wants to move. Usually after his surgeries, he is far worse with his breathing and I was very happy with anesthesia's choices this time.. far less respiratory decline. I felt he was better overall, but the nurses in the IMC were more concerned.
He spent the next few days in Intermediate Care Unit working back up to his feedings. His follow up echos and EKGs looked good and we were able to go home the weekend following Thanksgiving. We had a semi-Thanksgiving dinner as a family in the RMH and met some really amazing families. It is incredible experience to be giving thanks over a donated meal, prepared by such loving hands in that setting where you know that every family is more thankful for each day with their child than most people will ever appreciate. One of the families we met while there in October who had a child awaiting a lung transplant was sitting a table away with their daughter in their lap. 18 months old and she was on ECMO life support when we last saw them. Today, she is just an 18 month old toddler fussing over what she wants to eat off her plate. She got her new lungs 6 weeks before and has a brighter future ahead. Sam played in the playroom with an older child who had also just had a lung transplant. She approached him because she told him she knew what it was like to need oxygen like he wears.. but how happy she was to not need it anymore. What a blessing.. purely thankful for the ability to breathe without help.
Just to keep our life adventurous, on the way out of Houston, the door to our van fell off the car... like the straw that broke the camels back. After so much stress that week, I felt it was almost just too much and I was going to fall apart. But I know it is better to laugh than lose it in those horrid moments and I pray things will one day be easier. Things have been pretty tough for us financially due to all Sam's needs and the demands of the trips, stress etc.. and then when normal stress comes along like our dryer that doesn't work or grandparents who are moving into nursing homes for dementia, you sometimes find that there is just already a pile to throw it on and it feels like too big a load.
Since his surgery, we returned home for a month of recovery and tried desperately to keep Sam from using his left arm and shoulder. This was nearly impossible and he experienced alot of pain each time he would forget to reserve his movements. His incision has healed well and I am especially thankful for this as we had been home a few days and turned to find he had ripped off his own steri strip dressing which was slightly angry and bleeding. His cath incision points are still very visible but we had no issues there either. He had a strange cough when we first got home but it finally disappeared. The biggest issue was his palor. He has had striking pale periods since the surgery, at times just generally so and others more marked and scary looking. His Dr. ran a CBC which showed somewhat low hematocrit, hemoglobin, red blood cell counts and MPV counts with high leukocyte counts but I guess for him and having just had the surgery, there was no concern for now. I think maybe his body could even just be adjusting to the circulation changes of closing the shunt. I can't imagine it was good that for all that time he has been mixing oxygenated and unoxygenated blood and shunting it the reverse direction... so I am glad the ASD is closed.
The last few months have been so much to process emotionally... We have long needed additional income to help with all the medical costs and I decided to return to working again full time. Probably one of the biggest hits we took when Sam arrived was my inability to be in an office doing an 8-6 job.. pretty difficult when you are always in the ICU and managing not only our kids but all of Sam's medical stuff, so I began doing communications work for our law office, which was helpful but I really needed a position with traditional benefits and pay. So.. I just made a shift this month and am working for a great organization from the house. Although this post is a temporary one, I hope to find a permanent one in the near future. It just has to be flexible enough that I am not fired when Sam lands in the hospital. Haha.. I am praying a lot about this change... more than anything praying it adds wider horizons to my outlook on life that admittedly has felt some big dips.. I really try so hard to have optimism for our future and Sam's.. it helps to find a place to pour out more of myself. I have to be honest in 2014 about tough realities that are hitting us pretty hard. I am thankful that we have a business we fight for and that we have income, but I am praying for our costs to become within reach of that, for more work, for more clients, for a fighting chance to save our son and give him what he needs. I am asking for the right answers to finding a manageable pace in this difficult life... to being able to be a balanced person that refuses to let the emotions or stress of life take over.
2014 is just a few hours from now and I think my resolution will be to find the best pace for peace in my daily life. If those little pacer generators that sit in my son's body are helping him to find a fine, safe balance, a rhythm for living a better and longer life, well maybe I can emulate this technology in my own life with some positive change.
Happy 2014 to all of you and yours! May you find peace and joy in the year ahead.
