11 months old

A little progress report on Jesse -
Jesse is now over 11 months old. He can sit for a fairly long period of time now if I put him in a sitting position. He still "belly crawls" all over. His favorite things to go for are the shelf with the DVDs, and at Grandma's he goes across the living room to take off the grate over the heating duct and play with the spring door stop. He hasn't said any words yet. He definitely likes to be with Mom. At church he has stayed in the nursery a few times and plays fine for a while, but once he gets upset no one can calm him down so they have to come get me. He has started clapping, imitating me. He enjoys eating most foods, but especially likes graham crackers and yogurt.

Jesse's oxygen levels seem to be getting somewhat better, but it is strange to me how they can change. A few examples: Last night I turned off the oxygen while he was still awake and he stayed at 95% for quite a while, and still stayed above 90%, but within a few minutes of being asleep he was below 90, and soon down to 85%. But he was definitely going down slowly. On oxygen he stayed at 96-97% all night, then after a bottle at 6:00am in the morning he was down to 91-92% for a couple hours before coming back up. I'm not sure why he goes so low while he sleeps. I don't think that is pulmonary hypertension, but just because he breathes so shallowly. So, his heart cath is still scheduled for October 7th, but... I am wondering if he is staying in the 90s while awake, maybe he is getting better and doesn't need the cath. The doctor still wants to do it, but I am hoping to take him in sometime in September so they can do another echo. The one done in the ER was while he was on 1 liter oxygen, so that is why it looked better. I would like to see how it looks when he isn't on oxygen. But we will see what the doctor says...

We are getting reading for Sam's 3rd birthday on September 10th, and Jesse's 1st birthday on the 26th. And we plan to start our school year this week. Matthew is in 6th grade and Collin in 2nd. So we will have a fun and busy month.

Kristan

Doing Much Better

Jesse seems to over his cold, and his oxygen saturation levels are higher than ever (even higher than before his cold.) I don't know if this is because of the steroid, so it may be that once that is out of his system, they will go back to where they had been. I will talk to the doctor tomorrow to see about reducing his oxygen flow. Maybe Jesse is getting closer to not needing the oxygen at all!!! Praise God for healing Jesse from this lingering cold.

Kristan

Back Home

Jesse & I got back home today around 2:00pm. His oxygen stayed fine, except for a period this morning when once again it was in the 80's. This happened after his early morning bottle so I am wondering if he really is aspirating while drinking (although we already had the upper GI and swallow study done that showed he isn't.) I am wondering if he possibly aspirates when he is very tired or relaxed, basically asleep while drinking. That would explain the low numbers late in the evening and early in the morning. (But he has never had this problem in the past.) I will see what happens tonight.

I also weighed him when I got home and he is back down to 18 pounds 6 ounces, after LOTS of wet diapers yesterday. He was 19 1/2 pounds on Wednesday at Dr. Clark's office and yesterday at Children's. I am not sure why he was retaining so much water, but glad that he seems to have gotten rid of it.

He is busy belly-crawling all over, and having a good time here at home. His breathing seems better, but he still has a cough. I hope he is on the road to recovery.

Kristan

A Day at the ER

Jesse has been unable to get rid of his cold, going on 3 weeks now. So yesterday I took him back in to our doctor in Sterling who prescribed an antibiotic and a steroid. But then last night his oxygen was going quite low - into the upper 80's while on 1 liter of oxygen. When I spoke to the pulmonary hypertension nurse early this morning, she said I needed to get him in to see a doctor within a couple hours - either in Sterling or Denver. So we decided I should take him to Children's in Denver. I left the house around 6:00am and had him on a pulse-ox monitor the whole way. The first 45 minutes his oxygen was great - around 98%, but then around Fort Morgan it was back to the upper 80's, so I had him turned up to 1 1/2 liters part of the time. When we checked in at Children's he was at 92%, but once we got into a room in the ER he was at 95-99% all day! So none of the doctors saw him when he was having a hard time breathing. The cardiologist originally speculated that it was a heart problem (rather that a virus), because Jesse has also gained over a pound since last week (probably fluid). But they did an echo of his heart which showed his heart was doing great. So the final diagnosis is still a virus, with fluid in his lungs (not pneumonia). One idea for today's improvement is that last night's dose of steroids has started working. We will see what his levels are tonight. The cardiologist said as long as his oxygen stays above 88% that it is ok, and gave instrustions on when to turn up the oxygen, or when to call/come back to the hospital. We left the hospital around 5:00pm, and Jesse and I are staying with Steve and Wanda overnight because I am too tired to drive home. Please pray that his oxygen levels stay up and that Jesse can finally get better. (If he gets over this, his heart cath is scheduled for October 7th.)

Kristan

Heart Cath Postponed

Jesse has had a cold for over a week with various symptoms. Friday I took him to the doctor in Sterling, but by then he had no fever and Dr. Clark thought he had a virus. Then Sunday Jesse had a runny nose. But the doctors at Children's said they would still do the heart cath if he didn't have a fever, and the drainage was clear. So Chad & I came to Denver late yesterday. Jesse's oxygen was a lot lower last night and most of the night I had him at 1/2 liter oxygen. We went to his first appointment this morning with an ENT doctor to go over the sleep study results. But I don't feel like the doctor really went over the results at all, and didn't really explain anything to us. He did answer the couple questions I asked, then he did another scope even though I said he just had one done in June. It showed his adenoids were slightly enlarged, but he didn't feel that they would contribute to the apnea, and didn't see any need to remove them at this time. So, I guess the diagnosis is that Jesse primarily has central apnea, which may go away as he grows. He said he would want to do a repeat sleep study, but didn't say when. I then asked for a written copy of the report and read that after leaving. I have a couple questions I am going to ask Jesse's cardiologist.

After lunch we went in for his appointment with a pulmonologist. Here they used a pulse-ox and found his oxygen was in the mid 80's on his normal 1/4 liter oxygen. We ended up having to go up to 1 liter to get him up to 94-95. We did a chest x-ray which showed he does not have pneumonia. So they think he has a virus. Since his oxygen was so low they will not do the heart cath, for a couple reasons. One is that his pulmonary pressure is probably quite high right now, so the heart cath would not be a good indication of his normal pressure. Also, the pulmonologist is going to do a bronchoscopy to look at his airway and down into his lungs. After this procedure she said healthy child will need increased oxygen (around an extra liter for at least 4 hours) and sometimes need to stay the in the hospital for a couple days. So she thinks because of Jesse's problems he has a greater chance of needing hospitalization after the procedure, so we want to do it when he is healthy, not when he already needs extra oxygen.

So, now we wait again - for at least 3 weeks after Jesse is well. We are staying in Denver overnight to make sure his oxygen levels are stable, and not getting worse, and then we will go back home tomorrow.

Thank you everyone for your prayers.

Kristan

Fun in the Water

Jesse LOVES bath time. In the tub he likes to have just a small amount of water and lie on his tummy and squirm around. I have to hold on tight! He also enjoys going in his pool outside.

Kristan