My last post Saturday morning left off as we were waiting for doctors to make their rounds. Hayden had a better night Friday night than he had during the day, but it was still a struggle. Kelsea and I took turns holding him in the chair while the other tried to sleep on the couch in the room on the 10th floor. This went on through the night until he finally fell asleep in Kelsea's arms around 3 or 4 in the morning on the couch/bed while I made my way down for what was probably my 8th cup of coffee and a Snickers as I prepared to watch the next episode of Friends on one of the TV stations.
After waking up, Hayden did much better. He still didn't want to be laid down in his bed, but he was doing better. Rounds came and they said clinically, on paper, he was good to go home. However, they wanted to observe his feeds again overnight. We told them we were ready to go home; however, if they felt it was absolutely necessary to keep him again, we trusted them. BUT....we were ready to go home!
The attending surgeon made her way in to Hayden's room later that morning and checked him out. She said that he looked good and she felt comfortable sending him home with us. She said they know they can trust us and that we are his best advocates and they know that if there was a problem, we would bring him back right away. She finally gave the green light and signed the orders to kick us out. I went back to the hotel to load the vehicle, and just like that, we were gone, heading home, with absolutely nothing attached. I think my dad said it best when he posted the following on Facebook: "Can you believe it? Hayden will be leaving Children's Hospital in a few minutes....... no IV's, no feeding tube, no vent tube, no OG line , no heart monitor, no PICC line.....and for the first time in his life, NO Omphalocele!!!!!!!!!!!!!! "
Just a week ago, I was certain he would come home with oxygen and a feeding tube. I had even asked the doctors to put a feeding tube in because I was so worried that he wasn't getting the proper nutrition (he wasn't either...remember the PICC line was only a "Pic" line and he could only get the partial TPN!). How many times does a parent ask the doctors to put a feeding tube in??!!!
We were ok with him coming home with those things, apprehensive, but ok if it meant we got him home. However, once again, God blessed us with having nothing attached to Hayden except his mom and dad's arms!
We left the hospital around 3:45 Saturday afternoon. Hayden had a couple of prescriptions, all except for one that were technically OTC. The one that wasn't OTC was the one he really needed. This was to help wean him off of his narcotics. Most pharmacies closed at 6 in Quincy, and I knew we wouldn't be able to get them filled. I thought about getting it filled at a Walgreen's a few blocks from the hospital, but remembered the one in Quincy was open 24 hours....and I was ready to get out of Dodge!
Hayden fussed some on the way home; not his normal asleep in the car self, but it wasn't horrible. We were home around 6 p.m. and I was back out the door by 6:30 (after playing with Tucker for a few minutes) to drop the prescriptions off at Walgreens. They were going to be ready about 7:30, so I pulled around and played on my phone while I waited for them to be filled. However, I was interrupted by a phone call from Walgreen's stating they did not have his medicine and that all the other stores were already closed and they could try again at 10 tomorrow morning once more local stores opened. I had Kelsea call Dr. Asbury and see if there was anything we could do to keep Hayden from going off the deep end with withdrawal symptoms until tomorrow. He was due for his next dose in 30 minutes and would be ready again for the following one at 8 the next morning. She said it would not be good if he missed two doses.
Walgreens informed me that Jacksonville was the next closest Walgreens that was open 24 hours and they would call to see if they had it. My response was, "Jacksonville is 90 miles away and that doesn't help me get the medicine!" I was running on 2 hours of sleep in the past 36 hours, hadn't showered in the same amount of time, was hungry, and ready to be home. The clerk giving me this "dumb" idea was not going to help me. However, I quickly realized what I had to do. Ugh.... Yep.....you guessed it! After all of the aforementioned "negatives" as well just finishing driving 2.5 hours from St. Louis, I left Walgreen's (after they called the Jacksonville store first!!!), stopped and got a large coffee and a large Mountain Dew, and pointed the truck East on I-72 at 8:00 at night!
I called Kelsea as I was pulling out and told her to hold on to him if she could, I would be home as soon as possible. He, of course, was fussing and inconsolable and I felt so bad for her, and him. The drive wasn't all that bad. It went pretty quickly. I was home by 11 and Hayden got his meds. He was in bed asleep shortly after that and didn't wake up until the next morning.
His crying and agitation has continued on and off for the past three and a half days. Kelsea and I try to remind ourselves that Hayden is experiencing many normal baby stuff, but we are also cautious not to just write it off as "normal." We know that gassiness is something that all babies deal with. We know that teething and wanting to be held is something that all babies deal with. However, since his intestines and other organs are not necessarily in the correct anatomical place in his body, we still need to be aware that he does have the potential for problems that other babies wouldn't have. For example, last night was rough. He would not sleep for more than 15 minutes at a time and from yesterday afternoon until about 1 this morning, he had bouts of crying/screaming, almost non-stop along with arching his back. When he was held, he was good (for the most part). When he was put down in his crib, he would start screaming again. When he would fart, he would be better, for a while.
Again, we know these are all things that most babies deal with, but when it goes on for 4-5 hours at a time, it seems like it is excessive.
Sunday brought a new day. Hayden had turned into an absolute pig! The first day he started eating in the hospital, he set a record for the amount he had eaten in a 24 hour period. Since he was eating so little before his surgery, we would still measure the amounts in milliliters and not ounces. His first day, he ate around 650 ml. He had only eaten over 600 ml probably 4 or 5 times in his life!
Sunday, he blew that out of the water and hit the 700 mark. Monday, he did it again and ate over 800 ml in a 24 hour period! This is absolutely some of the best news we have had! Hayden's Broncho/Tracheomalacia can only be "cured" if he outgrows it. In order to outgrow it, he needs to eat. He wasn't eating well before his surgery, but things have changed. He dropped close to half a pound while he was in the hospital, but in the 3.5 days we have been home, he has gained more than a 1/4 of that back!
Over the past few days he has continued to have his crying/screaming fits, but we are still attributing that to gas and his intestines kind of being all over the place. This may be something he fights for a long time. However, he is back to his normal, happy self. Hayden was happy to be home to all of his toys and his Tucker, Slice, and Killer. He was also as close as close can get to rolling over on his stomach (on his own) in the first 24 hours since we had been home from the hospital. If it wasn't for his arm underneath him getting in the way, he would've done it!
We haven't really mentioned it to a lot of people, but if you recall, Mandy Murphy from Fox 2 in St. Louis did a special report on Kelsea and Hayden's birth back in January. You can view that post here. Well, they wanted to do a follow up on Hayden. They actually had their camera crews back in the operating room as they fixed Hayden's Omphalocele. We were supposed to do another interview with Mandy at the hospital last week, but I asked to push it back several times due to Hayden struggling as he was and Kelsea and I were not emotionally ready to do an interview. As luck would have it, Hayden was sent home before we could meet, so she settled for a phone interview yesterday!
It definitely won't be as big of a piece as she previously did (I'm guessing) but it should be pretty informative. It is set to run on the 10 o'clock newscast tomorrow night (Thursday, July 11). Hard telling where it will fit in, but check it out. If you're not in the St. Louis metro area, you can watch it online here: Fox 2 On Air Streaming.
While we were waiting for Mandy to call us, we got a call from Dr. Warner to check up on Hayden. We were both very impressed that he called to see how Hayden was doing since he had been released. Even though we know God is in control and placed this man in our lives for a reason, we are still very thankful for the work/role that Dr. Warner played. I also can't say enough about all of the doctors, nurses, and staff of the PICU and entire hospital. There were several things that I witnessed that a parent never wants to witness that gave me a different outlook. Seeing your son "code" two times (meaning he had respiratory failure) and watching people save his life and breathe for him, put things in a new perspective. These doctors and nurses and technicians took an interest in Hayden, our son, and he was more than just a patient and a job. I could see it in their eyes that they worked on him as if he was their own son. For this, I will always be in debt and grateful for their help.
Obviously, the previous paragraph shows that I am thankful that the good Lord placed these doctors and this hospital so close to us. There are many, many things that I am thankful for and could go on and on for days. Right now, the biggest thing I am thankful for is to have my family all together again....even if there is not room on the couch for me, and that Hayden has been eating like a pig and even though he lost some weight while in the hospital, he is quickly catching up.
Sat. 07/13/13 - How are all of you doing? Hoping everything is continuing to go well as Hayden recovers at home. Our thoughts & prayers are with all of you always. May God continue to Bless all of you, A friend in prayer.
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