Our trip to Seattle was not really how we thought it would go, but it ended up being all that it was supposed to be. We went with the expectations that Poppy would likely come home with a G-tube, and it just didn’t happen. It didn’t happen for a couple of reasons. The week before we left, Poppy came down with a cold and ear infection that really took her down. The antibiotics she was on for her ear infection ended up really taking a toll on her tummy 😦 We were still encouraged to make the trip because she had other follow up appointments that needed to happen, and there was still a chance she would turn around in time and be well enough to go under for the G-tube procedure.
Despite Poppy being sick, transplant cardiology was very happy with her heart!! Her tricuspid valve regurgitation actually dropped from moderate to mild!!! Hallelujah!! Everything else looked really good!! Thank you Jesus!!
She also had a follow up with audiology. We haven’t had any concerns with her hearing, ever, but because of her time on ECMO, it’s standard protocol for audiology to follow her until she’s 3 or 4, as some of the medications she was on can cause hearing loss. She was soo sick to her tummy during the hearing test, I was nervous about how she did, but she actually showed normal hearing!! Woohoo!! Praise God!!
Her G-tube consultation went really well, and we left there thinking she would have one placed in the next 2 days. Dr. Meyer, the interventional radiologist ordered an abdominal xray just to be thorough, to check on the shunt tubing placement in preparation for the procedure. All we had to do was check in with anesthesia to see if they thought she was well enough to go under.
It was be end of a long day, and it was obvious to everyone that she was in no condition to go under 😦 As much as I didn’t want to believe it, my gut feeling was confirmed by anesthesia
They said no anesthesia for at least 3 weeks. Because of how irritable and fussy Poppy had been ALL day that day, they also encouraged us to have her shunts checked while we were there.
Her MRI looked good so we were definitely relieved by that. Praise the Lord. It’s like, she’s going to get irritable and fussy when she’s sick.,.of course she is, but it’s the thing of if we miss a shunt malfunction and it becomes an emergency situation, further brain injury can occur. It probably seems crazy that we always are checking her shunts when she’s just plain worn out from normal things, but there’s too much to lose if it is in fact shunt failure. And so we may seem a little ‘crazy’ but we’re allowed to be. 😉 lol!
That same day, Dr. Meyer called back and said that the abdominal xray did not reveal any space for the G-tube and said he actually ended up feeling rather uncomfortable to even do the surgery at all…ever. Because of the 2 shunts that control her Hydrocephalus, 1 shunt running down each side of her body, with the tubing running into and draining in her peritoneal space, there actually isn’t room for a G-tube, and the risk of infection along with her ability to fight it off, being immune suppressed, was just not something any of the interventional radiologists were comfortable doing. He said he had one other call in to a general surgeon who does complex cases like this one and he was waiting to hear back from him. Well, that general surgeon, Dr. Goldin was willing to see us first thing in the morning to discuss this.
Dr. Goldin had spoken with all of Poppy’s providers before our meeting to be sure he had a good idea of her overall health picture and agreed with everyone else that a G-tube would be the very best route to get Poppy eating by mouth. He spoke with one of Poppy’s neurosurgeons, Dr. Browd, and the two of them will do the surgery. Dr. Browd will actually have to move shunt tubing out of the way to accommodate the G-tube, but he’s more than willing to do it and feels comfortable with it. Because of Poppy’s immune suppression, they expect her to heal a little slower than typical, so she will likely have a slightly extended stay post op. Obviously the risk of infection is what scares us the most. Peritonitis is not common, but it would put you or I in the hospital on IV antibiotics to fight it. Poppy is immune suppressed and also has shunt tubing that runs straight up to her head in her peritoneum…you can kind of understand our concern….
It’s like, here we are, she finally gets to have a G-tube and everyone is on board..EVERYONE!! It is the best thing for her- she would do so well not to have the NG tube running down the back of her throat anymore!! Many of her cohort ate by 100% by mouth within just a few months after their G-tube!! I mean…quality of life for sure!!! An NG tube just is not sustainable and is not doing her any favors with her feeding therapy….We have been on our knees in constant prayer over this decision….God could miraculously make her eat anytime!! And God can surely protect her from infection…we have seen Him do it countless times before. I remember when her chest was open for 2 months in the CICU post Norwood…how about her entire 5 month hospital stay?!?!! No infection!! How about after all her shunt revisions aka brain surgeries x6 ?!!!! I mean, God can do anything!! We just want to be in His will. And so we’ve been and continue to be in prayer over it. We truly feel that the Lord is asking us to step out in faith and trust Him and His sovereign power and will…and reminds us that He continues to have it ALL in His perfect hands.
Her G-tube surgery is scheduled for November 4th at 10am. She will also have Opthalmology, Transplant Cardiology, and Neurology follow ups this same trip as well. We ask for your prayer over all of this. ❤️
In the meantime, Poppy has turned the corner with her tummy bug, and actually finished a 4 oz jar of baby apple sauce in 2 days!! She never finishes the jar before it’s expired, so while it seems small…it’s actually huge for this girl!! Hallelujah!! It hasn’t yet become the trend, but I’m hopeful! She was also put on Prevacid in addition to her Zantac and it really seems to be helping her reflux!! She was also switched back to the most broken down formula known to man, EleCare Jr. Though it’s technically a step back, she really seems to be tolerating it much better than the Peptamen Jr. which is a huge blessing.
Crosby started preschool and is absolutely LOVING it!!! I’m soo so happy for him!! But he’s getting soo big 😦 He turns 3 in just a couple weeks!! He is quite a guy 😉 Poppy continues to love her therapies (physical, speech/feeding, and occupational) and is slowly hut surely progressing!! And I’m thrilled to announce that Poppy is signed up for the Intensive Feeding Program at Seattle Children’s in April!!!! Woohoo!! Thank you Lord!!! You are so very good to us!!! ❤️