I'm writing this from the ER, and I'll get to that in a bit, after giving an update from the last week or so.
This past week has been Calvin's spring break. Nik and Maia were in town to visit, so most of spring break was spent hanging out with family (games, food, conversation) ...
...and dealing with medical issues (one in-office appointment, some visiting nurse appointments, several phone consultations, and all the usual things we are managing at home). The newly replaced GJ tube has been causing some new issues, including some intermittent sharp pain at the tube site and increased discomfort related to the tube feedings. Unfortunately, the soonest we could schedule an appointment with interventional radiology to see what the issue might be is this coming Wednesday. In the meantime, we have reduced the amount of nutrition given each day to about half of our goal amount, and that seems to be helping some.
The best medical news of the week is that the swelling in Penny's legs has decreased dramatically. The thrombectomy and stent seem to have done their job. (One side effect of this is that Penny has lost a fair bit of weight again -- the extra weight from the fluid retention. She's hovering a few pounds above her low from 3 or 4 weeks ago.)
One of Penny's goals for spring break was to avoid a hospital stay while Nik and Maia were in town. Nik left Friday, so that goal was accomplished, although we've been on "ER watch" for a couple of days as the issues with the GJ tube have worsened.
On Monday, Penny accomplished another goal -- to join us for duck pin bowling. We used a wheel chair to get from the car to the bowling alley, and Penny needed assistance to get up the big step from the main floor to the lane, but she managed to bowl one game before deciding to relax and watch the rest of us.
A third goal was to finish Jason's birthday blanket in time for his birthday on Thursday. She was still sewing in ends earlier in the day, but everything was done in time for gifting in the evening.
For the curious among you, the pattern is called the "Gambler's afghan". The width and color of each stripe is determined by rolling dice.
On Friday morning, Penny was very nauseous, and we made one more attempt to get the interventional radiology appointment moved forward. We weren't able to do that, but were told we could go the ER if things didn't resolve. The nausea subsided, and we decided to wait things out at home.
Saturday evening we called with some new symptoms that are consistent with internal bleeding, and that landed us in the ER. Things have been moving fairly slowly, but the blood work shows that her hemoglobin is quite low -- also consistent with internal bleeding. The current plan is to get a blood transfusion and to begin the prep for a CT scan in approximately 5 hours. In the meantime, Penny will be admitted to the hospital.
We are hoping to get some more information sometime during the day on Sunday.
Comments
Karen Ludema: Like someone else posted, the time of the post was somewhat alarming, but I am glad to hear of the quality family time events. And the idea of the gambler's afghan is so satisfying that I may need to complete one. Continued prayers and love.🙏❤️
Nathan Bos: Thanks for the explanation for the gambler's afghan pattern, fun that there is a math-y part! Glad to hear you got some spring break in your spring break.
Teri Warners: Dearest Randy and Penny-Celebrating with you the joys of this week, and lamenting the challenges. Hoping and praying that being in the hospital expedites figuring out the problems with the GJ Tube and low hemoglobin levels.
Alisa Tigchelaar: Sharing your celebration of joys this past week, dearest Randy and Penny: a hospital-free visit with dear ones, bowling and a lovely birthday blanket completed for gifting time. Thank you for pictures! Praying now for resolutions for the challenges. Much love. 💗
Talon Rindels : How wonderful to have the family together for Jason’s birthday! Gorgeous afghan - the gambler seems to have fared well. Standing with you as you navigate the current ER trip/hospital stay. ❤️
Jim Ludema: Love the gambler’s afghan with Jason and mom all wrapped up in it. That’s a beautiful and impressive piece of work! I’m very sorry about Penny’s continued struggles the GJ tube and hemoglobin. I hope you get resolution soon. We love you guys and are holding you in our prayers.
Randall Pruim: We showed the photo of Penny and Jason to one of the nurses who remembered that Penny had been working on it the last time she was in the hospital. Fortunately the last part, when it had gotten biggest, was done at home.
Jim and Andrea: Well...I thought when I saw the time of day that the post was written that there might be a problem...but it sounds like some significant family milestones were achieved before succumbing to the medical news. I will await thr news of the CT. Bummer.
Barbara Bjelland: So much love in your family! Sending more love and prayers for you dear ones.