Back in the saddle again – if by saddle you mean baby jail

Every time I plan a long photoblast it turns into an update that we’re in the hospital! The title pretty much says it all, but I might as well get all this down for future reference.

Last Sunday night (the 7th) to Monday morning, we had quite a miserable time overnight. Leah was up very frequently gagging and groaning and crying, and in the very early morning had a fever of 103.4. She also had four little red specks on her leg. We decided to take her up to urgent care. Of course, by the time we were at the doctor’s office Leah was in a delightful mood, clapping her hands and beaming at the doctor.

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He concluded that she likely had a viral infection, but that she looked good and we should just keep an eye on her and bring her back if she got worse. I pushed back at him a little bit since Leah tends to surprise us with funny things that aren’t your run-of-the-mill virus, but he seemed pretty confident that was the problem. Still, by the time we left the elevator and stepped into the lobby, he had called me back and recommended that we get a chest x-ray just in case. We had another rough night on Monday, and I actually wound up sleeping in the recliner in Leah’s room for a good portion of the night because it seemed pointless to leave the room when I would have to come right back in next time she woke up. She finally fell asleep around 2AM.

Tuesday morning the doctor called us back to let us know that the chest x-ray wasn’t conclusive for pneumonia, but her lungs looked unhappy enough that they wanted to treat for pneumonia just in case. Okay, he didn’t say unhappy – but I can’t remember the term he used.

So Leah had her antibiotics, and gradually improved throughout the week. We kept her home from therapy on Tuesday and Wednesday because of her continued fevers, but by Wednesday and Thursday we were starting to see more improvement (and get more sleep). On Friday night everything just sort of went to the birds. We had friends over for dinner and had an absolutely lovely visit, and Leah even went to sleep relatively on-time. Then around midnight she woke up fussing and gagging. This continued all night, and early Saturday morning she spiked a fever of 102.6. By about 5AM we noticed that she was breathing pretty fast, and by 6AM she was practically panting in her sleep. Based on what we’ve seen in the past we didn’t feel like we needed to get an ambulance, but we definitely needed to get her to a doctor Saturday morning. So that’s what we did. We got an early appointment and they admitted her from the pediatric urgent care clinic – but not before making us shlep all over Sunset Blvd to get labs and x-rays done. We still don’t understand why they didn’t just admit her first and then do testing – they weren’t going to send her home with the way she had been breathing.

The nurse at the peds clinic scared us for a minute. He came out and was so somber and told us that she was going to be admitted and that the doctor would be speaking with us soon. We asked him if the labs showed anything and he said the doctor would speak with us. So naturally we started worrying immediately. Our big concern at that point was this enterovirus that has been going around. But then we asked him again if he could tell us what the labs showed and he said something about low red blood cell count, and at the same time I got an email showing that she had high white cell counts. And the nurse was so somber. So we started getting a little antsy and worrying that maybe we should be worrying about leukemia. The L word sort of lurks in the back of the brain for parents whose kids have Down Syndrome since it’s more likely to show up in our kids than in typical kids. And he seemed so solemn! But then we also considered that he is used to breaking the news of hospital admission to families that haven’t spent months on end in the hospital, so perhaps he was being solemn for that reason. So we tried not to worry too much, and thankfully what worry we did worry seems to be for naught. Leah is anemic – very anemic. The working hypothesis seems to be that Leah caught a virus or something, and that it may or may not have developed into pneumonia (they are treating her for it out of precaution), and that her anemia has probably developing for some time and isn’t necessarily the cause of her shortness of breath but certainly isn’t helping. From Saturday morning to last night, Leah was requiring daytime oxygen; she was desatting to about 89-92% without it. She was satting as low as 84% while sleeping, and that’s with her old O2 level of .25L. As of today she’s back to her usual O2 regimen, except that when we take her home we will need to keep her on O2 while she naps and while she sleeps instead of just overnight.

But wait – there’s more. Leah has a lot of congestion in her lungs, and the doctors doubled her Lasix to ward off heart failure. Her cardiologist came in yesterday and advised us that he now recommends that Leah’s heart be repaired next month instead of waiting until she is 4 or 5 year old. His previous recommendation was to wait because there was no indication that we needed to do anything immediately. But at this point he feels Leah is just going to keep bouncing back into the hospital with respiratory infections all winter and that is going to be hard on her lungs. It will be safer for her to go into this cold and flu season with a repaired heart. So we spent the night contemplating open-heart surgery.

Today, the pediatric cardiac interventionist came in to discuss the possibility of repairing Leah’s VSD via cardiac catheterization. It’s a procedure that is done pretty consistently for PDA repairs and for ASD repairs, but typically not for the VSDs. But this is the way of the future, apparently – they are developing ways for more and more of these procedures to be done by less-invasive means. If we go ahead with this procedure it will take place in only a few weeks. So Leah is getting a blood transfusion tonight to boost her iron levels since she wouldn’t have enough time to replenish her blood count and iron levels between now and the future procedure with just iron supplements.

So we have a big decision to make. Go with the far more dangerous procedure that WILL be a total fix – assuming Leah actually pulls through open-heart surgery? Or go with the far less dangerous procedure that still has risks and may or may not fix the leak (again, assuming Leah pulls through), but is far, far less risky and has a significantly better recovery time? Letting Leah go through this winter without a repair is a pretty risky proposition as well. So. That’s where we are right now.

Also, this:

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3 thoughts on “Back in the saddle again – if by saddle you mean baby jail

  1. I can’t even imagine how insanely difficult this is for all of you. I know you will make the right decision. I pray for complete and easy healing and a much better New Year!

  2. I know this is crazy for u all to constantly be in hospital after hospital fighting to get little Leah in normal health only to find out more bad news….So sad…Ur decision will come from God n u will know it’s right…So praying for both u mom n Leah bug….Be strong n hang in there….We love u all…Angels be with u all. :*(

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