Discharged

Poppy was discharged in the late afternoon yesterday. It felt so good to be able to go to our room at the Ronald McDonald House. It was obvious Poppy felt more comfortable and secure.

Yesterday before being discharged, Poppy had her echo and EKG done. The transplant team figured since she was there, they should do their check on her. The sonographer was amazing. Poppy had just finally drifted off to sleep and she was actually able to complete the echo without waking her up!! I mean, she was so conscientious and quiet, I was impressed and felt very blessed by her and the way she worked. During the echo, it seemed like she kept looking at a certain spot, and being that Poppy was soo still, part of me figured she was just being thorough and taking advantage of the stillness. And the other part of me had a feeling something was up. Needless to say, the results couldn’t come soon enough!!

Dr. Albers called today and said that the echo looked good overall, however her tricuspid valve regurgitation is now moderate. At the last echo it appeared mild, and the echo before that was mild/moderate. Deducing that possibly the echo before this wasn’t a great picture perhaps? Regardless, her TR (tricuspid valve regurgitation/leakyness) is now a solid moderate. Poppy will see Dr. Hardy next month to keep a close eye on it and be sure it does not become worse. Soo thankful this can be monitored at home, but would love your prayers that her TR would improve!!

We have been absolutely blown away, overwhelmed by the people who have made it a point to visit us and bless us with hugs and goodies and just their genuine care and concern. Hospital staff, heart moms, volunteers, and friends have just shown us such love this trip, it means more than words can describe- truly brings me to tears. Thank you all for your fervent prayers and loving support. God is soo good.

Poppy has a routine neurology follow up, complete with a EEG on Monday, as well as G-tube follow up where they will teach me how to use and care for it. We should be on our way home Tuesday morning, courtesy of Angel Flight and one of their generous pilots. Seriously overwhelmed by God’s abundant provision.

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Recovery

Poppy had a great night of resting and catching up with old friends in the CICU. Mid-morning, we were transferred to the floor! She is back on feeds through her NG tube, as she is to wait a full week before trying out her new G-tube. With her immune suppression, the healing process can take longer than usual, so that’s the reason for the wait. So far the g-tube site looks really good and Dr. Goldin is happy with it! I will be taught how to use it and care for her skin around it on Monday. If she is able to get back up to full feeds tomorrow, we will be discharged to the Ronald McDonald House!! That’s right!!!! They called this afternoon with a room for us!!! Thank you Jesus!!!

Just before I got the call, I was talking with the resident and I’m pretty sure I scared him..lol 😊 He started talking about possible discharge tomorrow and asked me if I had plans to stay in the area for a few days or if I was going back to Montana for the weekend. Obviously I’m not going back to Montana for the weekend πŸ˜‰ but I told I’m that Ronald McDonald was full and that I had no plans. He looked worried and ask if I needed any help with making plans. I said I really don’t get to make plans….you can’t really make solid plans when your baby is in patient and your baby is Poppy. I told him not to worry 😊it will all work out the way it is meant to. He left the room slightly unsettled lol. I know I shouldn’t get such a kick out of it, but when you’re sleep deprived and hyped out on coffee??? I mean?!?!!! 😊 but it made me giggle. I’m such a planner by nature that I really do know where he was coming from..but Poppy doesn’t really ‘do’ plans so I’ve had to grow my patience and wait on the Lord and His timing.

Thank you all soo much for your love and concern for our girl. We are so incredibly overwhelmed by your prayers and support..it’s truly Divine.

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G-tube Surgery Update

I had hoped to update sooner, but we’ve been …well, busy. He came out and said that the procedure went perfectly!! Hallelujah!! My girl finally has a G-tube!! 😊 Words truly could not express what a divine victory this is for our girl!! Big big day!!! 😊

Dr. Goldin and Dr. Browd decided that instead of moving shunt tubing to make room for the g-tube, that Dr. Goldin would instead, move her stomach. This was music to my ears, as my main concern came with touching the shunt tubing and infection risk with that. They decided that this option was safer over all and they both felt it was the right thing to do! !!! Hallelujah!! Soo so incredibly thrilled!!

Poppy was upset in recovery, so I was allowed to go back and attempt to console her. She was in a lot of pain, and still coming out of anesthesia. After an hour or so, and some morphine and tylenol, she seemed ready to rest, so we began the transfer to the floor. Upon getting there and getting settled, she decided to hold her breath and began to turn blue, only never caught her breath, becoming unresponsive. She had to be bagged. Her oxygen sats dropped to the 40’s (normal is 95-100%) That, in all my days of staying with her in the hospital, she’d NEVER done that. She will old her breath briefly at home when she’s very upset, but immediately catches her breath and it’s over. My girl was blue and because the nurse had to bag her (give her rescue breaths) she called a code blue. Within seconds she had 20 people in her room, many of which are CICU nurses and doctor. After talking it over, they decide she is not ready for the floor and needs to go back to recovery and let the anesthesia wear off a bit more. We went down and I held her the whole time. After 3 hours of groggy sleeping and intermittent crying, with a tiny bit of oxygen help, and no de-satting, we were ready to go back to the floor….or so we all thought.

She had just received more tylenol and all of a sudden she does it AGAIN!! Not responsive, arching her back and turning blue, oxygen sats dipping in the 20’s this time. No patting or sound or anything could make her catch her breath- she looked at me like she was stuck and scared 😞 Bagged again, code blue..again. With that, it was up to the CICU for observation. No doubt the Lord’s hand is all over this. The staff who surrounded us today was indeed Divine. I’m so incredibly overwhelmed by the Lord’s unfailing provision. It’s just so humbling and obvious and unexplainable. This hospital is family to our sweet girl, and it’s just indescribable. Goosebumps…tears…gratitude..joy. God has surrounded us with His presence, it is clear. Thank you for all your prayers ❀️

The thought at this point is that she’s at the developmental stage of holding breath when upset, coupled with coming off of not so ideal anesthesia (she usually has no problems- and she’s been put under umpteen times!!) is the culprit. Into the evening, she began to perk up and had some more appropriate awake time. Thank you Jesus for this, because if she hadn’t been more responsive and interactive, they were looking at ordering a head CT just to rule out shunt issues. Up until this point, she seemed very out of it neurologically. But she gave us this time of being tired but appropriate which was such a tremendous relief- thank you Lord!! Since then, she felt she just had to initiate her poor night nurse, and thought she’d do it again!! This time dipping into the 50’s and turning blue. She is sleeping now and being closely watched. We are hopeful that tomorrow, the anesthesia will be worn off and we can feel good about moving to the floor!! Praying this is all it is. Thank you all for your prayers ❀️

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