Somehow we have managed to find ourselves back at Children's Healthcare of Atlanta at Scottish Rite. This time, for GI issues.
Long story short, since returning from Memphis last Friday, Claire hasn't been herself. She has been tired and listless and has spent most of her days (and nights) whimpering in pain. It has been really tough to watch and we have tried everything possible to identify the root cause and make her feel better.
On Monday, we noticed that her belly was really distended, so we gave her a suppository. It did not do the trick (at least, not immediately). After rubbing her belly and feeding her apple prune juice, she fell asleep. During the night, she had a dirty diaper, so we thought her problem (and ours) had been solved.
Not so. On Tuesday, she was once again bloated and writhing in pain. We took her to her pediatrician, who examined her and suggested that we give her some Miralax, which we did, but it did not work. We went to bed hoping that she would once again poop in the middle of the night. We woke up disappointed.
Then yesterday, she was miserable all day. We called her pediatrician, who recommended some home remedies, which we tried, and which failed. Although Claire had one big poop during the day, her belly was still distended afterward and she continued to whimper in pain and contract her abdominal muscles.
We went to bed last night thinking she might feel better in the morning, but by 2:00 a.m., when it was clear that Claire was so uncomfortable that she was unable to sleep, we took her in to the Scottish Rite ER.
We spent the better part of the night and morning there, and doctors still haven't figured out exactly what is wrong. They did, however, detect that her potassium levels were dangerously low (which can be life-threatening), so they decided to admit her and start a potassium IV drip. If her levels improve, we will be able to go home.
I must say, I am exhausted. Not just from being up since 2:00 a.m., but just in general, from all of these hospital visits, all of the blood draws, the CT scans, the MRIs, the EEGs, the medications, the injections, the therapies, the Katie Beckett paperwork, the insurance paperwork, the scheduling, the researching, the reading, the understanding terms I wish I never knew. Then, on top of that, having to work full-time. And there have been so many missed milestones, even some regression, and so many bad diagnoses and prognoses.
We had a conversation with doctors the other day about the severity of Claire's limitations and about the fact that children with severe limitations usually have shorter life expectancies because they are more suceptible to things like pneumonia, scoliosis, etc. and just can't fight them like typical children can. It breaks my heart to think of a time when Claire might not be around, and it hurts now to see all of the difficult things she has to go through. Will things ever get easier for her? From the doctor's discussion the other day, it sounded like things would only get worse.
Yes, there has been a lot to celebrate, but today, the only party I feel like throwing is a pity party. For me and for Claire.
I am sorry Claire and all of you are having to go through this. But please do not let the doctors get you down. They don't know everything. Don't give up. Things will get better for Claire! I just feel it!
ReplyDeleteThere is no stress, no bad day, no sadness that compares to the ache a parents' heart knows when their child is not well.
ReplyDeleteI am so sorry. We hurt with you over this.
Sometimes doctors are wrong. And sometimes doctors are right. The knowledge of that fact makes us fear. But always, always remember fear has everything to do with the mind, our thought pattern and belief system. If we believe in the promises of God, we will have no reason to fear. The bible admonishes us to, “Let this mind be in you, which was also in Christ Jesus.” - Phil 2:5. I read this once:
"Jesus expressed feelings of compassion, sorrow and anger, but there are no accounts of him expressing feelings of fear. Some may ask WHY? Well, Jesus suppressed self and operated through the Father. Everything that he did, he accomplished via his Father. He did not try to stand in his own strength because his Father already gave him the assurance that he will be with him every step of the way, making bridges over troubled waters and leading him through the valley of the shadows of death. He had an experiential knowledge of the protective care of his Father, so He knew that come what may His Father will take care."
God helps us adapt and adjust to whatever the journey is as it comes. I think that is a miracle.
You have a support system behind you praying. We're here to hold you up when you're too tired to do it yourself. (Exodus 17:9-13)
And praying for more beautiful smiles from Claire to come your way, putting energy back into your tired body.
*hugs*
I can hear the heartbreak in your words. Sometimes it is all just too much, isn't it?
ReplyDeleteRemember to take some time to yourself. I know it is easier said than done, but make sure you take just a little bit of time to be alone and collect your thoughts and even do something completely unrelated like looking through a magazine, or going to Target.
I can not imagine how emotionally and physically exhausted you must be. And things always look worse when we are tired.
Praying for you all, for much easier days ahead, for peace, strength, perspective.
Also sending big hugs.
I cannot even pretend to understand the magnitude of what you are feeling - I know what I imagine you feel, and when I picture Norah or Ellie having to go through a fraction of what Claire has had to go through, it breaks my heart. While I can only imagine that, what I can SEE and KNOW from your updates - Claire is one tough, sweet cookie with resilient, patient, knowledgable and loving parents. There is nothing that you three can't handle. It's not fair that you HAVE to handle it, of course - but I've no doubt at all that Claire is a trooper and you & Brad will guide her through with love. It is probably pointless to point it out, and it likely helps you not at all at this moment - but white flag or not, you guys are doing an awesome job. Know that, please!!
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