A week ago, we made the trek over to Seattle planning for a week full of appointments. Poppy was to have her annual heart cath with biopsy as well as a sedated MRI on Monday. The cath/biopsy is one of the best ways to check her heart for rejection, and the MRI to get a better idea of where her seizures are originating from (knowing this could help her doctor prescribe the antiseizure med that’s most appropriate for treating them). Other appointments consisted of Otolaryngology to hopefully get her scheduled for tonsillectomy, adenoids, and tubes. Neurosurgery follow up, Neurology to discuss her MRI results and seizure medications, Transplant Cardiology, and a sleep study to address her de-satting during sleep and oxygen needs.
Everything was looking alright for her cath. We had kept her out of public a week prior in hopes of keeping her healthy, as the last time we tried to get it done, she had come down with a fever and a cold the night before 😞Things were looking good until the night before….and then girl spiked a fever 101.7 😩Ahhhhhhhh!!! Please no 😩 Ugh it was frustrating, and completely out of our hands…why?!?!! Then I was actually hoping it could be explained somehow by an ear infection…We showed up the next morning hoping for the best. Because she had been up in the night with a fever and high heart rate, she looked bad 😁 The anesthesiologist almost wanted to try and then she got irritable and started desatting…case cancelled 😞 To be rescheduled for 4-6 weeks 😩 So bummed this had to be cancelled and rescheduled yet again, but knew God had it all. Bad things can happen when you go under anesthesia while fighting an infection, so while it was not what we had hoped, at the same time, we are so thankful for everyone erring on the side of caution. Labs and urine came back looking like a UTI, which was a huge relief in some ways..a treatable explanation!! Hallelujah!!
Since the sedated MRI didn’t happen, as they were going to do it while she was still under anesthesia from her heart cath, we just discussed medications with Poppy’s neurologist, Dr. Kollros. Poppy has had increased seizure activity since January. She had that major one that put her in a paralyzed state for 45 min back in January, and since they’ve been smaller, but she’s probably had around 6 this year. She has been on Keppra since she was 10 days old, and has finally maxed out on that dose- she has no room to go up on it. A couple weeks ago, as a result of another seizure, Dr. Kollros decided it was time to add an secondary medication over the phone. This becomes complicated in Poppy’s case, as many of the antiseizure meds can mess with her antirejection med levels, which are crucial to keeping her body from rejecting her heart. He chose the med that seems to do the best in her scenario, Lacosamide, also called Vimpat. So far, aside from the initial insomnia and spaciness that comes with antiseizure meds, she’s doing well. We are now at her target dose and it does seem she’s settled into it, as she’s sleeping again!! Thank you Jesus!! This girl needs her sleep!
Tuesday was the long awaited appointment with Otolarangology (ear/nose/throat). Poppy has been mouth breathing and fighting chronic ear infections for the past 6+months, even requiring oxygen at night. It was just as we (us and Poppy’s entire medical team) had hoped…they NEED to come out and she needs ear tubes. The sooner the better,and because we are here from MT, they are adding her in on Wednesday!!!!!! Hallelujah!! Such an answer to prayer!!!! Because of her complexity, she will be in ICU overnight and then to the floor for ideally just one night. They want her to stay close for a week or so to monitor for bleeding. We would love your prayers for a safe and successful procedure and speedy recovery!!
Neurosurgery had scheduled a follow up with a haste MRI (a super fast MRI of her head that requires no sedation, just a tight swaddle), even though it wasn’t quite time for a check up, and it was definitely divinely orchestrated. The haste MRI showed that the shunt that’s in her ventricle seems to be working well, as her ventricles look stable/same size as they’ve been. However, the shunt that is in her cyst is in question, as her cyst is noticeably larger than it was back in November. We discussed how Poppy’s been doing and overall, she’s been doing great, so we were honestly shocked to find this out. If the shunt is on its way to malfunctioning, then we are in the right place. Montana can’t help her with this, and should it become worse, it becomes an emergency situation fast. When shunts fail, it means that they no longer drain the cerebral spinal fluid off of the brain at the appropriate rate, causing fluid to accumulate and cause swelling in the brain. For people without Hydrocephalus, our body’s do this automatically. The brain bleeds and stroke that occurred when Poppy was her sickest and on ECMO are what injured her brain enough to cause Hydrocephalus. Since she’s 2, her fontenal has closed, a shunt malfunction that isn’t able to be addressed fast can quickly lead to more brain damage and if undetected and untreated, death. So, because of this change and Poppy’s track record of having numerous shunt revisions in the past (2013), they are going to tap her shunt while she’s under anesthesia for her tonsils. Tapping (inserting a tiny needle to check pressures etc.) the shunt can provide them with numbers that can help them determine how well the shunt is working. Praying praying she won’t need a revision…while they are life saving, brain surgery comes with its own set of issues neurologically and risk of infection is higher for Poppy because she is immune suppressed…Shunt revisions mean switching the shunt out in brain surgery. It’s all in Your hands God..it’s all in your hands. Just as we are hearing this news, Ronald McDonald house calls with a room for us!!! Thank you Jesus!!! This was a huge answer to fervent prayer!! He always provides…it’s overwhelming and so comforting to have a room so close to the hospital, as our trip is becoming a much longer one than we had planned. Thank you Lord, You have this…please calm my anxious heart.
Even though her cath hasn’t happened yet, she still got to check in with Transplant Cardiology. After her looking so terrible on Monday and coming back with questionable labs, it was so good to hear that her heart looks stable!! And because her chronic vomiting and diahrea have been much improved since her switch to Imuran from MMF/Cellcept, and she’s been bolus feeding for a few weeks now, they are excited for her to finally participate in the Intensive Feeding Program in July! Her cath/biopsy and MRI are scheduled now for July 9th. Praying she stays healthy so this can actually happen!!!!
Poppy has been on the waiting list for over a year for the Intensive Feeding Program, and in January, we optimistically signed her up for July. We agreed if she was ready and all of her providers agreed it was time to try, we needed to go for it! So far things are looking good for her to participate. The Intensive Feeding Program is very hard to get into. They only work with 2 kids per month and consists of 2 weeks of meeting the Feeding Therapist, Karen Quinn-Shea and team 3 times a day to practice eating. They also cut calories through what she typically gets through her gtube, so she actually gets hungry. This all needs to be medically supervised, especially in Poppy’s case, because of the affect her transplant meds have on her kidneys, she really needs to stay well hydrated to prevent kidney damage. They will do frequent labs to monitor this throughout the program. We are praying the timing is right, it’s been a long road even just getting her to this point with feeding, we are hopeful the program will help her get closer to getting off of her gtube!! Praying that if God has a different time in mind, that He would make it obvious.
Poppy’s sleep study went pretty well. She woke up a couple times throughout, but otherwise seemed to do pretty well. Otolarangology was interested in doing this, as was Neurology, as her seizures always occur around sleep. We are anxious to hear the results!
Somewhere in the meantime, she will see Opthalmology and Neurodevelopemental as well.
So just like that, we are spending most of the summer in Seattle! We knew we would be out a couple times for appts, but hadn’t really planned on a 7week stay. It is clear we are where we need to be for right now..God has clearly orchestrated this whole thing. He has provided a place to stay, divine timing for all of these appointments we’ve been praying to take place…we can be here and do this as a family now without Brad having to take time off of work (he’s a teacher)…it’s ALL in His hands.
In church yesterday, we sang ‘Great is Thy Faithfulness’ and I found it hard to fight back tears…
Great is Thy faithfulness, O God my Father;
there is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not;
as Thou hast been Thou forever will be.
Great is Thy faithfulness! Great is Thy faithfulness!
Morning by morning new mercies I see;
all I have needed Thy hand hath provided;
great is Thy faithfulness, Lord, unto me!
Summer and winter and springtime and harvest,
sun, moon and stars in their courses above
join with all nature in manifold witness
to Thy great faithfulness, mercy and love. Refrain
Pardon for sin and a peace that endureth
Thy own dear presence to cheer and to guide;
strength for today and bright hope for tomorrow,
blessings all mine, with ten thousand beside! Refrain