Home AGAIN!

First before I go into our traveling events, I want to wish TITI a very HAPPY BIRTHDAY today and a safe trip to Florida! Call us when you get there...

We came home from Columbus yesterday afternoon around 3:30 P.M. The trip home initially was uneventful...the first part was great. Both boys slept. It was the last part of the trip that turned eventful. Jared woke up and we were watching and talking about the route signs and ways to get home on different highways. Jaime was asleep. He was satting at 100% most of the time. We left him on a 1/2 liter and our plan was to bump him down to 1/4 liter when we got home and could watch him closer. Well, his coloring and breathing along the way were horrible. He was very gray and cold. His breathing was labored. As I said, he was satting 98%-100%, so I was very confused. This continued regardless of his position in the car seat and even after we gave him a few car seat breaks. He had a bottle at Titi's house around 11:00 A.M. and didn't have another one until after 4:00 P.M. He refused his bottle until then. This was very unusual for him. He continued to work hard at breathing. I felt so bad for him. Tom and I actually turned him up to 3/4 liter O2 to help him out a bit. His color started to "pink up" slightly.

Let me back track a little...Jared's little world got turned upside down once again, he started to act up at Titi's house (only when we were there from what I understand...sorry, Titi!) Well, his increased bad mood elevated his blood pressure..and for those of you who know Jared know EXACTLY what happened next...a bloody nose! So, I had to give him Factor and Amicar at Titi's house. This was an "event" in itself. So, once in the car and Jaime started having issues, Tom and I discussed how driving all of the way to high risk clinic wasn't worth disrupting both of our son's lives. Jared, of course recovered quickly...he's had 2 bloody nose since yesterday morning...one in the car just before getting home and one just after his bath. So far today he seems alright.

Now, back on to Jaime. He did NOT recover quickly from his trip. He continued to be gray, lethargic and started to desat. He even had some apnea and "brady" episodes. We were SUPPOSED to go back to Cincy for a cardiology appointment and hematology appointment next week again. Tom and I spent the last part of the drive trying to make appointments for Jaime to see drs. in town to avoid next week. Jennifer, Jaime's Godmother has a son (Brandon, the one who just graduated H.S.) who has a heart condition. Tom said to call her and ask her who his cardiologist is. (Why didn't I think of that, I'll never know! Thanks, Tom for being more sane than I was at that point! ;-) Anyway, Jenn happened to be out of town visiting Brandon's heart specialist, though she has a home cardiologist as well! She gave me the number, I called and get this...they just so happen to have an appointment the very day and time we were supposed to go down to Cincy for ours. So, of course I took it! He is a dr. with Akron Children's Hospital, but works out of Beachwood. His specialty is congenital heart defects. PERFECT! I called Jaime's home pediatrician to ask who she'd recommend...low and behold it was Dr. Bockoven! Apparently, the main cardiology team at Rainbow's left for the Cleveland Clinic, so she has been sending her UH patients to him. We were so glad that things worked out that way. Why not add yet another Children's Hospital to Jaime's care team! HA!
Now as for the hematology appointment, Jaime was always supposed to have an appointment with hematology at Rainbows this month, so we don't NEED to go to Cincy for that either.

As for the high risk clinic. While it was GREAT to see everyone again, the main thing done was Jaime's height and weight. Tom and I both feel that Dr. Hellerstein could have sent that info to them to see what they wanted to do with him. We didn't need to put Jaime into a pulmonary hypertension crisis, we didn't need to disrupt Jared's world AGAIN just for that and we certainly didn't need to put more miles on my car. (Not to mention, inconvenience Titi again, by "dumping" Jared on her.)
I called Amy at high risk clinic to share our thoughts with her. She agreed with us. Jaime was in a pulmonary hypertension crisis (not the worst one he's ever had, but nonetheless one and we weren't in the hospital to have the nurses and drs. help him.) Anyway, Amy told us to turn Jaime up to 1 liter and reinsert his NG and to let him rest for a few days. If he got worse we were to bring him the ER. We had to call the O2 company to ask how to turn him up to 1 liter at home as Jaime had a pediatric adapter connected to his O2 concentrator. We got him up, but his breathing was still labored. I'm not a nurse, but I know what his lungs sound like, so I listened to him, no air was passing through his right side at all. It took several hours on 1 liter to get him to stop retracting and to "catch his breath" and regain some color and warmth to his body. In the meantime, Tom and I tried to put the NG in, Jaime, as disgusting as this sounds, actually coughed it out of his mouth while we were advancing it. We were horrified and immediately took it out. Shortly after that, Jaime decided he did indeed want a bottle. (I swear, something about that NG always makes him perk up when it comes to eating...thank God!) As a side note, I put the Duoderm patch on Jaime's cheeks again to put the NG back in, well, once again his skin blistered. The jury was still out the epidurmus bullousa skin condition, but we can tell...now more than ever, that Jaime does indeed have some sort of skin condition. I'm sure this will be followed up at a later date.
Jaime started looking and feeling better by late last night. He does continue to desat a bit on 1 liter, as well as have some apnea and brady episodes, but overall, he's acting like himself! Eating again, smiling again...he was even smiling while Tom was patting his chest in the middle of a brady episode where he dropped to 70. (Tom thinks he liked his mini chest compressions...HA!)His breathing, although not 100% great, is much better than yesterday. His chest is rising again instead of the just the left side rising with breaths.
Anyways, we're going to be low key for a few days. I doubt Jaime will even leave the house until next week when he has his appointments. The less excitement around here the better! Only a calm, quiet atmosphere will allow Jaime to heal faster. Tom's parents are coming for a visit on Saturday, but that's about the extent of what we have planned for the weekend.
So, in short....having written a novel, Jaime is NOT a good traveler, nor is it really safe for him. That trip nearly landed us back into the hospital, at the very least, we had to take a few steps backwards in Jaime's progress. So not worth it just to be weighed and measured! While we will miss seeing the CDH Team, our RCNIC and Cincy friends, we can not risk another trip down to Cincy at this time. We will continue to be in touch with the high risk clinic, but everything will be done over the phone until Jaime becomes preop and we're back down in Cincy for him to have his fascia closure surgery.

OK, I'll go for now, I'm sure many of you have stopped reading the novel by now!
Here's hoping for stable days ahead!!!!

P.S. Baby Jackson Beal, another CDH'er was born last night around 7:30 P.M., as of the update, the drs. were having a tough time stabilizing him and were considering ECMO. You can read their blog at: beal-jackson.blogspot.com. Please keep the Beal Family in your thoughts and prayers!