A step closer to home

We had our care conference on Monday. We met with one of Wesley's main doctors, primary day nurse, social worker, occupational therapist, respiratory therapist, and pediatrician they have been consulting recently. We discussed the necessary steps and medical attention needed to bring him home. I must say it is a blessing to hear them talk about getting him home, not just measures for survival. It's no longer "if" he gets to come home, it's now "when" he gets to come home. We know where he has been medically. The main problem has been with his lungs. That is still an ongoing battle and will continue even after he comes home. But for the good news.... He had an eye exam on Monday. One problem with preemies is that their retina can become detached since it did not have as much time to form in the womb. Their eyesight can also be damaged due to the high oxygen levels received through the ventilator. He was getting the eye exams about every 2 weeks. The doctor said his eyes look great, and he doesn't have to have another eye exam for a year!!! So it appears we have avoided eye problems. Another thing we have to be thankful for is that it appears we have avoided any serious brain damage. Only time will truly tell on that one. They have monitored him for hemorrhaging to make sure there has not been any bleeding on the brain. It appears there has been none. The occupational therapist is very pleased with his responses. She said that he responds well to voices and tracks people with his eyes. He follows doctors and nurses in and out of the room and responds to other stimuli. It may be too soon to say that he has no brain damage, but at this time, all things are looking positive.

Now, to the not so fun part. Wesley has been receiving his feeds through a feeding tube dropped through his mouth or his nose. It will still be a while before he can take feedings directly from a bottle. Even once he can start feeding from a bottle, he may not take enough from the bottle to give proper nutrition. He may tire out from doing this, and at this time, we need to be able to allow Wesley to focus his energy into breathing. We discussed our options with the doctor, and he strongly suggested that we surgically place a feeding tube through his stomach. The doctor suggested to perform a gastrostomy to insert the feeding tube. The tube will eventually be replaced with a Mic-key button that can be closed and more flush with the skin. They would also be tightening the entry to the stomach to prevent any reflux back towards the lungs. Along with this surgery he suggested to fix Wesley's hernias. We all agreed on that. With the need for surgery, he also needed a way to receive IV fluids since he would not be receiving any feedings before the surgery or for a while after the surgery while his stomach healed. They said he would need another central IV line which would mean another broviac line. They wanted to do all of these surgeries at the same time. The second thing the doctor wanted to discuss with us was the options for the trach. We are still torn on this option. Wesley has already proved he can do well on the c-pap, but the pulmonologist would rather proceed with the trach in case they need immediate access. The problem with this is that if we proceed with the trach, it will have to stay in for several years, most likely for around 3 years. It would be placed below his voice box, so it would not affect his speech, but he would not be able to talk or make noise while the trach is in place. He can place an artificial speaking button at the trach entrance after he no longer needs it for constant ventilator support. There are just a lot of issues we foresee with the trach and would prefer to avoid any more surgeries. So after leaving the meeting, the only thing determined is that we would proceed forward with the first surgery and give him some recovery time before addressing the trach surgery again. He will also need to get his vaccinations soon, so we will do that once he recovers from the stomach surgery.

A few hours after we left the conference, the doctor called me and gave me the report from the surgeon. We were planning to schedule the first surgery for some time within the next week. The surgeon we wanted to perform the surgery had an opening the next day (on Tuesday) or would have to wait until after he came back from vacation, which would be another 2 to 3 weeks. At this point in time, there is no reason to delay the surgery and the sooner it is done, the sooner he should ideally be able to come home. So we agreed to have the surgery on Tuesday.

Luckily John and I were both able to be there before and during the surgery (thanks to John being off work due to the weather and understanding managers at my job). We wanted to hold him before he went in because we won't be able to hold him again until he is fully healed from the surgery. It was a shock to see him because they had him on a different c-pap, so he looked like a little alien baby. The cap had fallen down and was covering his eyes, you can see the pictures below. The surgery was scheduled for 1:00, but the surgeon was delayed and he went in at 2:00. He was in surgery for about 3 hours, then the surgeon came and told us that all went well with the surgery and the nurses would have him back in the nursery soon, they just needed to get him cleaned up. It was a relief that all went well, although it was a relatively routine surgery, we were all scared to put him under. The only problem that happened during surgery was trying to place the broviac. The x-ray machine they had in the operating room apparently stopped working, so they had to get one from the other hospital building. It made the surgery last a little longer, but no harm to Wesley. The broviac was placed again in the middle of his chest and there is another incision on his right shoulder where the needed to place the broviac. He has a large scar running from the middle of his chest down towards his belly button. Then he has the tube coming from the side of his stomach. He also has 2 small scars towards the lower part of his abdomen for the hernias. With the hernias, the surgeon also had to do surgery to re-attach his right testicle as the hernia had pushed it too far down. He will have some pretty serious battle wounds once this all heals. I stayed the night with him yesterday and all day today. He was in a lot of pain, I felt so bad that he had to go through all of that. They had him on a lot of pain medication and a lot of sedation so that he could just sleep through it. They had to put him back on a ventilator for the surgery and are just going to let him relax while he heals. Once he seems to be over the pain of the surgery and begins breathing along with the ventilator, they will move him back on the c-pap. Then we will address the trach issue with the doctor again, but at this point, I would rather not put him back through surgery again. We still have a few weeks, maybe longer before that is addressed again.

Keep little Wesley in your prayers, right now we just want him as comfortable as possible and in as little pain as possible after surgery. Pray that we can avoid any infections and that the surgery all heals well and is truly beneficial for him. I have posted a few pictures below of the new c-pap and his body after the surgery. I did not take any pictures of his boy parts, he may still be a baby, but it just seemed a little inappropriate.



Pictures of my little alien baby:







Day after surgery pictures: