CHOP update

Brandon's nurse Chris just called to tell me that the ambulance is leaving CHOP at 10:00 and should be at Monmouth around 12:00.

Still Waiting

We are still waiting for Brandon to be transferred to CHOP. CHOP called the NICU this morning to tell them that they are waiting for a space for Brandon. He is not an emergency situation since he is only going for his eyes so when some babies are discharged and a space opens up they will call the NICU and then we will have more of an idea of when he is going. We found out that I can definitely ride in the ambulance with Brandon so I will do that and Stu will follow right behind.

I forgot to mention yesterday that Brandon started feeds again and is back on the nasal cannula. He was at 21% (room air) on the cannula for most of yesterday. I assume he is still at 21% now but I will find out when we go in later. They started his feeds but he is only getting 5 cc's. They have to build up slowly to what he was getting to make sure his stomach continues to be okay. He had 3 feedings by bottle and did well. For some reason they wrote an order for all of his feeds to be by bottle but we do not think that is right since he was only getting 2 bottles a day before he got sick. Maybe since he is on such a low amount that is why they wrote it for all feeds. The nurses have been giving him every other feed as a bottle which is fine by me. His nurse last night told me I might want to mention at CHOP that he only started bottle feeding so that once his feeds are up to where he had been before he can work on getting good at one bottle before he is expected to do all feeds by bottle.

I will post an update to what is going on when I get a chance.

Retinopathy of Prematurity

I got a phone call this morning from the eye doctor who has been examining Brandon's eyes. Brandon has to go to CHOP (children's hospital of philadelphia) because he might wind up needing laser surgery. His eyes are now in stage 2 at zone 2. They can still possibly correct themselves at this stage but they could also get worse which would require surgery so they want to transfer him for a second opinion. Unfortunately CHOP and Jefferson (also in Philadelphia) are the only hospitals that do this surgery and the eye doctors from there will not come to Monmouth to examine his eyes so that is why he needs to be transferred. He should hopefully only be there for 1-2 weeks. It is very uncommon for babies from Monmouth to actually need this surgery. The last time they even sent a baby there was in 2007. From what some of the nurses have told me prior to now the reason babies need the surgery is from nurses going up on the oxygen to quickly. He will be transferred either tonight or tomorrow morning. We will find out more later. I will try to update when he is there but I am not sure how often I will have time to get on the computer. I will be staying at a hospitality room or Ronald McDonald house when he is there. Stu will be with me at least through Sunday.

Starving

Poor Brandon is starving. Hopefully he will be fed again tomorrow. They still have not been able to feed him because his platelet count is still pretty low which is part of the virus and there is still a little blood in his poop which is part of the virus. Dr. Rekedal said he is hoping to get him started on feeds again tomorrow. He is also hoping to get him back on the cannula tomorrow. I hope he does go back on tomorrow and off of CPAP because the CPAP makes his nose so stretched out. It goes back to normal once he is off of CPAP for a few days. Brandon has been sucking on his pacifier all day really hard. I think he is thinking if he sucks hard enough maybe it will give him some milk. Chris, Brandon's nurse today, said they are going to give Brandon a new formula called alementum when he starts to eat again. It is supposed to be a lot easier to digest but unfortunately is pretty expensive. I forgot to mention in my post on Sunday that Brandon is in a new isolette. He was downgraded again to one of the older isolettes. Sue thought it was a good idea to give him a nice clean, germ free isolette once he was starting to feel better. I arrived tonight to Brandon having an absolute hissy fit. He was screaming and moving his whole body all over the place. He is definitely feeling better.

Back to being himself

Brandon is back to being himself. He is as feisty as ever. He weighed 1920 grams tonight but it may not be that accurate. He had a blood transfusion today and usually they give him lasix after which is a diuretic because he can retain fluids but they did not tonight. He also has two iv's in still so they could have added a little extra weight. We dressed him in a onesie tonight. He has been in only a diaper since he got sick. He is on straight CPAP at 21% (room air) so he should be back on the nasal cannula in no time. His sats (oxygen) were great tonight when he was on room air. We did put him on the cannula when he got weighed so I took some quick pictures before he was put back on CPAP.

Quick Update

One of the nurse practioners just called. She told me that Brandon is getting a blood transfusion. She also said that he is being switched to straight CPAP. He had been on the CPAP with the assisted breaths. They are not going to resume his feeds today because of the platelet count and a few other signs of the virus that are still present. They will talk tomorrow to see if they will resume his feeds then.

Feeling Much Better

Brandon seemed to be feeling much better last night when we were at the hospital. He was moving around a lot more than before and crying when he was bothered. He was also sucking on his pacifier which he had not been doing when he did not feel well. Before I left the hospital he had a big poop. That was really good because his bowel sounds had not been good due to the virus. After his poop they improved. I came home to sleep last night since he was doing well. Sue said she would call if anything changed and said I could call as much as I wanted. I did call in the middle of the night once and this morning. Both times she said he was doing well. He had another big poop and she took the tube out of his stomach that was taking the air out since there was no more bile coming out of it. His CO levels improved. When he first got sick he was in the 80s, this morning he was down to 59 which is much better. His oxygen on the CPAP was down to 21% which is room air. He had started at 40% oxygen when he first got the virus. The hemoglobin level (I think that is what she said) is still low so if that does not go up he may need a blood transfusion and his platelet counts are low which may require a platelet transfusion. Both of these counts do get low with viruses. His body may make more on its own but if not he may need the transfusions. Sue seemed to think they will not feed him if his platelet counts are low. Hopefully they will go up soon or he will have a transfusion because he seems to be getting hungry.