Our trip to Seattle was really pretty great!! Dry roads both ways! Hallelujah!! Typically unheard of this time of year! Thank you Jesus!! All of her appointments were seamlessly on time, which is in itself a victory, as she had many lined up right after the other. We also got to see many of our favorite nurses this trip, even some of her night nurses!! It was really a treat 🙂 It made our visit for sure!! They are our family in so many ways. God is so good to have placed such incredibly loving, top notch care givers to take care of our daughter, and us as a family, really. They hold a very special place in our hearts, and always will.
Poppy’s appointments in Seattle went pretty well for the most part, praise God!! Cardiology was very happy with what they saw!! Her echo looked beautiful, she’s showing steady growth in both weight, length, physical, and social development. She can now roll from side to tummy!!! Woohoo!! I even think she’s charmed Dr. Y. Law 😉 Ummm… this is BIG!!! 😉 We are soo incredibly thankful for this fabulous report!! Thank you Jesus!!
Poppy also saw Neurology. This was the first clinic follow up with them. She had only ever seen them when she was inpatient. We discussed her recent EEG she had last month, and discussed the possibility of maybe weaning her anti seizure med, Keppra. Unfortunately, they are still seeing some abnormal brain activity on her EEG. They explained how this is to be expected, due to her history of brain injury (bleeds, and stroke), and though this activity has greatly improved since March, it is just not quite time to wean her Keppra. They are though, fairly confident this activity is not seizure activity, but we are to continue to be on the look out for both clinical and subclinical seizures. We will readdress everything again in March. Though we are excited for Poppy to come off of this medication, we know God’s timing is always perfect…always..and praise Him that the abnormal activity is improving!! It may not ever go away, but it could! 😉
Poppy had a follow up haste MRI (quick, no dye, no sedation MRI of just the head), and a visit with the neurosurgeon who was present at ALL of her trips to the OR for her Hydrocephalus, with the exception of the initial vp shunt placement. Let’s just say, he knows her pretty well. Her MRI came back with her ventricles looking a little bigger than he was comfortable with, prompting him to change the setting on her shunts and have her see Opthamology again at the next visit to check pressures on her optic nerve. Both of her shunts are Strata reprogrammable shunts that can be set with a special machine that uses magnets. So a change in settings really isn’t a big deal, unless you feel your child was acting appropriate before the adjustment, and you happen to live in MT. Yah, you guessed it….there are none of these programming machines in MT, so you can imagine my hesitation. The thing that I kept thinking about was…’hmmm…he’s concerned enough with the size of her ventricles to want her to get her optic nerve checked again…we just did this in September…ok..praying this is ok…praying praying she likes this adjustment and we aren’t back here in a week or 2 because her ventricles are too small (because maybe she prefers bigger ventricles), or even bigger due to a shunt malfunction!!’ And I’m still praying that…There were a few days when she seemed off and sleepy and out of it, and I made phone calls and a plan, but she seems to have come around, however, if she starts that kind of stuff again..at all..we are jumping in the car to Great Falls for a head CT. We just can’t mess around. She will have another haste MRI and follow up next month to check in. He also said, ‘no’ to the g-tube, just as we suspected. He was also disappointed with her oral feeding status…even asked me if I worked with her on it…I honestly really like the guy, and respect his work, but that comment about made me burst into tears. I wanted to say, oh no, I don’t work with her..no..why would I do that? Tube feeding is so cool and socially acceptable…everybody’s doing it..I want her to eat by tube forever…not..pardon the sarcasm but, seriously?! Anyway, enough about that…if anything, it lit a fire for me to try even harder, and get even more creative…we are going to show him!!! 😉
On another note…
Early Monday morning, Crosby woke up with a 101.3 temp, bright red cheeks, and a red rash all over his body. Needless to say, we freaked out. Brad called off from work, and took Crosby in to see Dr.Maynard in Great Falls. Our thought was, ‘what is this?! A rash all over?! Poor kid 😦 Where on earth did he pick this up?! We go nowhere except to appointments!! We have got to keep them separated!!’ It turns out, Crosby has Parvovirus aka 5ths Disease. The incubation period is anywhere from 4-28 days. It comes with a temp of usually no more than 103 and this awful red rash all over. Apparently this rash could last anywhere from 1-3 weeks!! Hence, Poppy has been exposed. Dr. Maynard and the Transplant Team notified Infectious Disease at Seattle Children’s, as they do in these types of scenarios, in order to get the best recommendations on how to deal with it. So far, the recommendations have been to keep on our regular sanitizing, hand washing, bleaching, etc and wait. If Poppy should come down with it, they will have her do some labs and put her on a medication to help support her through it. With a suppressed immune system, it’s just a different deal. So needless to say, we are praying fervently, not only for Crosby’s healing, and for him to feel better soon, but also for Poppy. This type of illness seems like it would be really hard on her for obvious reasons…and so, such is life. We wait…feeling His peace about it when I let Him have it…and feeling the anxiety of it all when I don’t. He is soo good. He knows what he’s doing ALL OF THE TIME. If she gets it, He will guide us through it, just as he does with everything.
In the last 3 days, Poppy’s diapers have decreased, her resting heart rate has trended up about 10-20 points, and her temp is 99s. She’s acting ‘dry’/ dehydrated, only there is really no explanation for that. She sees Dr. Hardy in Missoula tomorrow for an echo and overall check, and it’s sounding like the transplant team will want to do some lab work just to be thorough. Praying praying it’s not this awful Parvovirus showing up, or worse, rejection. Otherwise, she seems to be acting herself, so we really are hopeful for the best. I’ve even gotten some better vitals already this evening!!! “Be anxious for nothing…”God has this, as he does…always. Clinging to it!! Praise God for His word!!!
Tonight, we find ourselves overjoyed with the news of Poppy’s dear friend, Adrian, receiving his new heart!!! Hallelujah!! Thank you Jesus!! Praying for a safe and glorious night for Adrian and his family, as well as prayers for the family who is grieving the loss of their dear one…may He grant all His divine peace and loving comfort.
“Rejoice in the Lord always. Again I will say, rejoice! Let your gentleness be known to all men. The Lord is at hand. Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”