What a day… and it’s only 3! I’ll start at the beginning.
I had told Sammi that she could come to the hospital with me. I have been sleeping at home because I can. While Bella is in the PCU, the ratios are high enough that parents can leave if they need to. Our family has been doing this for so long, that the stress cracks are showing up. I may not get home till really late or I may have to leave at 5 AM, but there is something magical about Mama sleeping in her own bed, so I am trying to do that whenever I can. In this unit, there are many kids on ventilators and other respirator devices, so cell phones are restricted. Sunday I brought Becca up with me. Yesterday was supposed to be this huge test day (didn’t happen), so I didn’t bring anyone. Today we had been told might be a repeat of Monday because they were just going to try and fit us in. Consequently, I had told Sammi she could come with me to the hospital.
When it was time to leave, Lizzy lost it. She was so upset that she couldn’t go. She was crying. Joy was crying. I was very close to crying. Sammi relented and said Lizzy could come with us. So I brought two kids with me to the hospital today.
After our hour and a half drive down here, we walked in to find a CPAP machine in her room – ugh. The one night I don’t call to check on her in the middle of the night, she desats. Her lungs filled up and they had to give her IV lasix. She responded very quickly, and was doing fine when we got here. The CPAP machine is here just in case.
A Spiritual Care person came by the room. She was very kind. She gave the girls cards so they could write or draw prayers on them. They have a Tree of Hope down in the Chapel for the children’s prayers. That was nice. I have seen several pastors/priests here in the hospital. I have seen them here late at night or during the day. What a blessing to those in their care.
They decided to do another EKG because they thought they saw something over night. That turned out to be just fine. Then they walked in and said that we get to have our CT scan today after all. Happy day! Her CT scan went well. The anesthesiologist said that she did well until almost at the end – then she needed some extra support to breathe, BUT she never had to be intubated. Yeah!
We got back and got her settled. Then she had PT. Her sats actually improve when she is in a sitting position.
I have talked to many lung doctors today. We are increasing her calories per ounce. This time to 27 calories. With this change she will have less fluid going in. Our hope is to find the perfect blend of intake volume and diuretics. They are going to increase her lasix and are considering putting her back on diurel – so maybe up to 3 diuretics.
It’ll be interesting to get the results of the CT scan. From my reading, this is all a delicate balancing act until she can grow some new lung tissue. This is not a quick fix. But the goal is to find the right balance of medicine and support so we can avoid these crisis episodes.
And what have Lizzy and Sammi done all day? They have done their school work. They have had microwave meals for lunch. A child life specialist stopped by and brought them paints, games, and movies. She made sure they understood all about Bella’s equipment. She said that they encourage the siblings to come up. It has been nice for them to see everything. Once we are moved back to a floor, I will have to stay here and won’t be able to bring anyone up, but it was nice to have them here today.
Just another idea, have you ever heard of a medication named "iloprost"? Mia had to inhale with that besides taking Bosentan/ later Sildenafil-just an idea.
This is Joyce. I love the Tree of Hope for the children's prayer cards. Such a beautiful touch. I'm glad the siblings are able to visit with you. I personally think it is important to include them. It's not necesarily what we would select for them, however Arabella is a part of their life. I believe they will grow to be stronger in spirit and faith because of this exposure. I pray that Bella will do well today. Each day is a blessing. Hugs to all of you.
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