Saturday, January 25, 2014

Surgery and the Week from Hell

 So Monday Jan 20th arrived and we got up to the hospital early so we could spend some time with Wyatt before his long awaited surgery to get everything all put back together. He looked so good and was surprisingly happy considering he hadn't been given any food since 2pm the day before. We were super nervous but excited for his surgery because he needed to be put together before he can come home and we really wanted to get rid of his ostomy and his mucous fistula, but it is also a major surgery and he's still so tiny. It was so hard to take him downstairs and have him be wheeled away. His surgery lasted about 1hour and 40 minutes and when we came back to see him he was actually awake. They had talked about taking the breathing tube out because was doing so well, but then they wanted to keep the tube in so we could manage his pain well without worrying about him not breathing. We had to go up on his pain meds several times that day because he was in so much pain so we were glad he had an airway, but it was not fun having that breathing tube in. The next day we were really hoping to get that tube out but the nurse didn't want to change his pain meds so we left the tube in for another day. At that point he really wasn't breathing anymore on his own and was relying completely on the ventilator.

Right after Wyatt got back from the OR

They wanted to leave a drain in his incision for 4 days so that his belly could drain to help prevent infection

Wednesday came and he still wasn't breathing anymore on his own. We decided to cut his pain meds in half to see if he could get him breathing. After a few hours we stopped the pain meds completely because he still wasn't breathing. After that he really started gagging and coughing on his breathing tube. It was awful to see because he would cough and gag and since the breathing tube is in he wasn't able to cough out his own secretions so the nurse would have to suction them out. When they suction him it pulls all the air out of his lungs with the secretions which scares him and then he would try to cry and his oxygen levels would get really low. This happened multiple times every hour. It was so painful to watch. They had been checking chest x-rays and his right lung was collasped which they attributed to his secretions blocking his airway so we were working on getting his lungs re-expanded too. After 8 hours off his pain meds he still wasn't breathing consistently on his own. We decided to restart the morphine to see if maybe he was in so much pain and it hurt to breathe so he decided not to breathe. He also still seemed super sedated. Because he kept coughing and gagging that night we got another chest x-ray and they sent a respiratory viral panel and unfortunately we found out he had rhinovirus and his chest x-ray looked like he had viral pneumonia. When you have a breathing tube it causes your lungs to make secretions and the rhinovirus causes secretions, but then he couldn't cough him out and needed suctioning which causes his lungs to collaspe so at this point we were in a vicious cycle and his blood gases were looking worse and worse so we had to keep increasing his ventilator support. They also started some steroids to help with the stress of surgery and his cold in case adrenal insufficiency was part of the problem which is common in premature babies. He also had a lot of fluid on board from his surgery and was pretty swollen everywhere but especially in his face. This is caused by the stress of surgery and being sick. 

They had to start poking his fingers for blood gases because he wasn't perfusing his feet well. It was so sad to see all of his little fingers get poked

Isolation room for the rhinovirus

Looking really puffing post op

Thursday morning started off bad. He still had his breathing tube but was finally starting to breathe a little more on his own. He was really sensitive for any noises or touching or any kind of stimulation. They took the rate off his ventilator to see how well he would breathe on his own. During the trial he completely stopped breathing and turned blue and the nurses couldn't get his oxygen saturations to come back up and they got so low that they were undetectable. Soon his heart rate started to drop and got as low at 49 at which point the pressed the code button. The whole medical team came running and luckily they were able to get him back up once they bagged him without requiring chest compressions. The rest of the day was kind of touch and go. They had to change us to an isolation room because of the rhinovirus so that he wouldn't get any other kids in our room sick. Later that day he woke up for the first time since he came back from the OR. He was looking really good, but again he kept gagging on his breathing tube and coughing and getting mad about it. They repeated a chest x-ray and it was starting to look better so we decided to pull the breathing tube. He did really well for the first couple of hours afterwards but then started having some desat episodes where his oxygen levels dropped. After watching him during these episodes we figured out they were pain related. He would squirm or take a big breath which would hurt his tummy and then cry and hold his breath. The faster we could respond the better he would do so Scott and I didn't leave until really late that night. His nurse pretty much couldn't leave the room or she would have to get a baby sitter to watch him when she left. Once we got on top of the pain he seemed to get a lot better so we eventually felt okay to go home and try to get a little sleep.

On our way to the hospital Friday morning we got a call that he had coded again that morning. This code lasted about 2 minutes and again his heart rate dropped really low. They didn't have to do chest compressions and he came back up with bagging. For the next 3 hours he looked really good and didn't have any issues. They decided to start another medication called theophylline that is similar to caffeine to help his breathing as well as dilate his bronchioles and increase his urine output to get some of that extra fluid off. Right when we started infusing the medication he starting squirming and then his heart started to drop, he held his breath and within seconds his oxygen levels dropped from 96 to 80 to 58 to 7. By the time the nurse got to his bed he was dark purple and his heart rate was in  the 40's again so we called another code. Everyone raced back to his bedside and worked on him for a couple of minutes. The got a bunch of labs on him and checked another chest x-ray and no one could figure out what was going on. He sounded good, his labs were good and his x-ray looked better than the previous one. We changed his respiratory support to CPAP with a rate which is the highest support you can give before putting the breathing tube back. After this second code he looked surprisingly good and was awake for the next 3 hours. They did an EKG and had cardiology come and consult to see if any of these episodes were related to his heart which they didn't think so. We also discussed doing some brain studies of he had another episode to rule out seizures. Luckily the rest of the day was great. He was still on a lot of respiratory support and on all of his medications but at least he wasn't coding any more. He even got stable enough that we were able to hold him again and give him a sponge bath which we hadn't done since before surgery.
Chest x-ray right after his 2nd code on Friday

Happy to be extubated and able to suck on his binky

Finally looking a little more stable and snuggling with dad
We stayed at the hospital again Friday night and haven't left yet today. He has been stable all day today with only minor dips in his oxygen levels. His voice is really hoarse and he keeps coughing because of the rhinovirus which hurts his belly, but overall he is doing a lot better. We still are waiting for his intestines to start working again before we can restart his feedings and he is starting to act really hungry so we hope that is soon. We have been so grateful for all of our friends and family who are praying for us and have been supporting us through this really challenging time for us.

Saturday, January 18, 2014

50 Days and counting.

Today is day #50 in the NICU. Its gotten really old at this point.  Tuesday was a rough day for Wyatt and both of us. We started out the day with Wyatt needing to have his ostomy bag changed.  It sucks so bad for him because his skin is so sensitive from having to be changed so much. They are supposed to last 3 days but because of where Wyatt's is located, it lifts of his skin very easily.  Heidi and I have been involved in enough changes that we have seen what works the best and what doesnt and we change it ourselves now because I can usually get it to stay on longer that the nurses. Thats not a knock on them, we are the most consistent caregivers he has and we know what works best.

After the bag change, radiology came in and did an ultrasound on his kidney because he had a very early ultrasound that showed some hydronephrosis in his right kidney, which Heidi and I were never told about. We think it got lost in the shuffle of him being life flighted.  He still has some mild  hydronephrosis (which is some dilation in the kidneys due to a possible downstream obstruction) and we will need to have a follow up appt with Urology in 4-5 months. They don't seem too concerned about the severity of it.  They also did an ultrasound of his lymph node and found a second one that was swollen. They are swollen from the infection last week. We are watching it to make sure it doesnt turn into an abcess.  We then had to re-dress both the central catheter that goes in his chest over and down to his heart as well as the mucous fistula dressing because there was ultrasound gel all over them.

Those dressings are on there good and are painful to change out. It seems especially painful for him because he has extra sensitive skin.  While trying to change the dressings he was mad and grabbed the feeding tube going into his nose and tore it off his face...twice! That was also very painful for him. He just seemed uncomfortable all day and we had a hard time keeping him calm. I should say Heidi had a hard time keeping him calm because I was at work.

He also developed a rash which we think is from the antibiotics treating his infection. We both broke down at the end of the day yesterday. Its amazing what his little spirit can endure and it is so hard for us to watch and feel so helpless at times to make him feel better. We both love this little guy so much and get more excited and more nervous the closer we get to his surgery.

You can see where he ripped the tape off his face here and then you can also see the rash a little bit. 

Monday, January 13, 2014

I suck at this blogging thing.

Sorry that I haven't been keeping up on the blog. Its been mostly due to laziness on my part.  Its been a pretty good 2014 for us so far. A lot has happened since our last post.  Wyatt is now weighing in at 4 lbs 12 oz. He is working on feeding by mouth.  He can take 1/2 an oz by mouth 4 times per day. We have to keep him limited because of his ostomy bag. If we feed him too much too fast it will cause him to dump the food through too quickly and he wont absorb enough of the nutrients. He's still trying to figure it out. We have been dressing him at night since he graduated to crib. We do skin to skin during the day so he doesn't need the clothes to help keep him warm :).  We finally got him to latch and breastfeed a couple of times. Thats been really exciting for Heidi. He is also old enough now for  some toys.  They brought in a mobile on Friday and put it on his bed.

His Hematocrit has been really low (19%) It is supposed to be between 35-45%. Hematocrit shows your red blood cell count.  They gave him a DARBY shot which is supposed to help him jump start making more red blood cells but was not very effective for him. Thursday, they got more labs on him and it was very concerning for infection. Later in the day, we noticed that the skin around his mucous fistula ( where his re-feeding tube goes into his abdomen) looked pretty terrible.  The doctors did a whole septic workup on Wyatt to figure out what was going on. They had to take quite a bit of blood from him and decided to transfuse him again (transfusion #8) while they were at it. .  We woke up Friday morning and they told us that he tested positive for Staph, but they were doing cultures to determine if it was MRSA which is a very antibiotic resistant bacteria or the more easily treated MSSA.  Luckily it was MSSA. He was in a lot of pain though so Friday they had to give him a couple doses of Morphine to help him feel better and scheduled infusions of heavy antibiotics.

Wyatt has a schedule surgery date of  January 20th.  Heidi and I are really excited for his surgery because that will be a big step towards him coming home. At the same time we are terrified because it is major surgery and there are always risks. He will have to get the breathing tube and we wont be able to hold him for a while.

As far as him being able to come home, the doctors haven't even told us a timeline. It will all depend on how his surgery goes. We estimate it will be at least 2 more weeks after surgery if everything runs smoothly which seems like never happens in this place.

We love him more everyday. Thanks for all the thoughts and prayers. It helps.

Where his infection is located at. His refeeding tube goes in the corner of his incision here and you can see it is really infected and was really painful for Wyatt. 

First time using a bottle. Wasnt too sure about it at first, but does awesome with it now. 

We have to be sterile when we change out part of his lines which is why we have hair nets and masks.