Monday, September 20, 2010
The really long post
Well I certainly have a lot to say today. I have been trying to find a way to break it off in small chunks and give you a steady diet, but the information just doesn’t come that way and I don’t want to delay in getting any of it out. So, I apologize in advance for the length of this note and I would encourage you, if you aren’t able to read all of it, just to skip all the way to the bottom past all of my groaning, and get to the important prayer requests and acts of selflessness.
Madeline is doing good today, mostly being uneventful. The new neonatologist, Dr. Cassidy Delaney, came by and got caught up with Lisa earlier today. We’ll be seeing her for the next few weeks until the next rotation. I missed Lisa at the hospital and came into the room to find some new photocopied information on 9qSTDS. The information was from a small support group of known cases sort of describing the possible ranges of symptoms that can occur. I picked it up and began to read.
The symptoms, even within this group, vary wildly. One moment I am reading about fully dependent 19 year old who have gone downhill since 16 and has no social skills, the next moment I am reading about normal children whose behavior and symptoms are identical to my 3 year old, Miranda and I think, this isn’t so bad. As I read about seizures requiring constant medication , sudden death, 14 year olds who can’t handle stairs by themselves, my feelings began to border somewhere between despair and anger. How can this happen to me? Then I think, how selfish am I. Who am I to think that somehow I am better than other parents who have to live with this. I am no better than they, if anything, they are better than I.
When the nurse came in, I asked her about the booklet. I asked her if it meant that Madeline had been diagnosed. She said the confirmatory test had not come back yet and that she had copied the booklet for us. She thought it might be helpful for us to know what to expect, you know, the more information the better, right? I am not so sure about that. This information scares me. Is all this worrying for naught, I mean Madeline hasn’t even been diagnosed yet. Why am I even reading it? Even if Madeline does get diagnosed there is still such a range in severity of symptoms that the only way to know anything is just to wait and see. Why should I be reading into the future when I don’t know what the future holds. I found myself angry with her for giving us the information. I know I shouldn’t be, she is only trying to help.
I noticed that Madeline’s feed pump was upside down today. Normally they orient the syringe pump so the tip of the syringe points up, since the milk fat will separate and float to the top it makes sure she gets that most important part of the milk down the tube and into her tummy. Today the syringe pointed down, and there was wasted milk fat sitting there at the bottom of the syringe not getting down the tube. I asked the nurse about it. As she corrected it, she smiled and said she had been moving things around and accidentally inverted the pump the wrong way, she had made a mistake. Are you allowed to make a mistake like this when you have such an important job? I mean, right after that, the janitor came by to empty the trash. I have seen the same lady emptying the trash for at least 3 weeks and I haven’t seen her make a single mistake, she always gets both trash cans empty. She never forgets one, and her responsibility is just to empty the trash. Am I being too critical? I don’t know if I am being craggy or if this is something I should be speaking up about. I can definitely feel how this whole experience is wearing on me.
And so I must turn back to God in all of this. As I stray from Him, I get carried away in all that can go wrong and what I would do to fix it knowing full well that I am incapable of doing anything in this situation. I simply must trust in Him who is faithful and who loves me more than even my own parents do, that He is able to keep us standing through this trial.
I just had a great talk with Codi, our nurse. She came in to check on Madeline and then turned her attention on me as I sat quietly typing this email out. “How are you doing?”, “Fine” was my reply. “Do you have any questions?” “Nope.” She took a long look at me and asked “Is there anything you need to talk about?” This girl is good. Se we talked. She apologized about the booklet, she didn’t like the idea of it either. She said there are so many asymptomatic kids out there with genetic defects that you just don’t know about because they have not been tested. Geneticists love this stuff, it’s their candy, and they have an answer for everything and that is why they go looking through our DNA when they find something that can’t be explained, like Madeline’s heart. She said although it’s good to be informed as a parent that it can also cause you to treat a child differently and go looking for symptoms that don’t exist and making up new symptoms in your head. I told her that Lisa and I were supposed to get blood drawn and be tested for this defect. She said: “Only if you want to”. She warned me that a lot of parents don’t think about the consequence of being tested. What if you find out it was your fault? She said there can be a lot of guilt that comes with finding out you might be responsible for what happened to your child.
I told Codi that according to the booklet, one of the main symptoms that Madeline was supposed to have was hypotonia (weak muscle tone). Codi interrupted me with “and she definitely does not have that!” If you remember, Madeline has already pulled out one IV and they have to keep her arms tucked into her blanket because she keeps trying to pull at her ventilator tube. Thanks Codi.
I have felt a little self involved and more disconnected lately with others in similar situations here in the hospital. I had been praying for someone to minister to and God has answered.
I met Kiana’s mom, aunt, and sister in the elevator on the way out. Kiana is a 14 year old girl who had previously had part of her spine fused. She was in the hospital because of a massive infection she had developed in her spine. Doctors have been fighting it for the past week. The infection seemed under control but Kiana had recently started vomiting blood and doctors are not sure what is causing it. I told them we would be praying for her. When I asked how Kiana was doing, they laughed, typical teenager was their reply.
Then they told me about the boy in the room next door to theirs. His name is Rowdy, he is 9 years old and he and his family are from Wyoming. He had a 900lb bale of hay fall on him. He has suffered many broken bones and some brain injuries and was air lifted here to Children’s a few days ago. The main thing doctors are trying to resolve are the brain injuries and to what extent they are. His parents are living here at the hospital for the time being. Please pray for Rowdy’s recovery and for his parents too.
I also met Manuel, and wife (not daughter) Manuelita (Does this remind you of Dan and Danielle?). Lisa met them a few days ago, they seemed distressed and so she asked how we can be praying for them. They have twin girls Anastasia and Selena, one of them has a VSD and will likely require a heart surgery. They are from Albuquerque, NM and they too have been living here at the hospital. Please pray for their little girls and for the upcoming surgery.
Tess is a few rooms down from us and has been here for 6 months with her premature born twins Isaac and Lauren. She is from Montana (she says she practically lives in Canada) and her husband has finally been able to join her here (he had some work commitments that prevented him from coming sooner). They are really nice and their kids seem to be doing really good. They have been doing their laundry here and living at the Ronald McDonald house. Pray for their twins that they grow and learn to feed so they can soon all go home. Meanwhile they are enjoying the warm weather here, apparently it already snowed a foot where they live.
A quick update on Kate and Chris and their son Michael. Michael is home and doing terrific. They are so blessed, praise God. There is no shortage of things to think and pray about here. Not only that, but it seems there are endless opportunities to serve. I think about those that are away from home and how to best help them. Maybe some meals, maybe just friendship and someone to hang out with outside the hospital. Pray for Lisa and I’s continued involvement here. Pray that we could be effective in ministering the Gospel of peace. I was chatting with one of my customers and she reminded me how there may be trials, but there are always happy endings for those who wait on the Lord.
I got to hold Madeline for the first time yesterday. I held her for several hours but it only felt like 20 minutes. She spent the first part snuggling into my arm trying to get comfortable, then she dozed off. I just enjoyed the time being with her, talking on the phone, surfing the internet and studying my bible. Please continue to pray for Madeline Grace, pray for the results from the confirmatory DNA test. Pray for Lisa and I, and for all who live here at Children’s.
Shanker & Lisa.