Life in the PICU

Since bringing Morgan home we had very little to blog about regarding her condition. She remained pretty stable with minor bumps in the road. However, in late January that began to change. She went in for a small procedure to change her feeding tube to a more comfortable size. After getting some lab work done prior to surgery it was revealed that her potassium was high.  High potassium can pose risks during surgery.  Critically high or low levels can cause cardiac issues, and anesthesia can increase that risk even more. In order to lower her potassium Morgan was prescribed a medicine that would go in her feed and help to pull the potassium out of her feed and body.

Once we got her medicine to the correct level her potassium dropped back to a normal level. As usual though, if it isn't one thing it is another. The medicine has some side effects, and Morgan unfortunately suffered through a few of  them. The first side effect was her inability to move her
feeds and waste through her body properly. It also increased the sodium in her feeds. We were already giving her a sodium supplement so her levels increased too much. Her high sodium levels caused higher blood pressures. Last Wednesday we went in for a regular checkup with her nephrologist and cardiologist. Just as they always do they checked her blood pressure prior to meeting with the Doctor. Generally her nephrologist wants Morgan's blood pressure to stay between 85 and 130 systolic (top number). When she was checked her systolic was at 158, 152,160, and finally 148. Once this was addressed the cardiologist found that he heart had been experiencing some minor stress from these high blood pressures. They then decided it would be best to admit her to the hospital to get her blood pressure back on track.

Being admitted to the PICU brought us into a whole new environment. We came into a unit completely unlike the NICU. Rather than silence and soft spoken staff, we had noise all around the unit. It was overwhelming to say the least. Morgan was immediately placed on an I.V. drip to stabilize her blood pressure. It took a couple days, but it is now stable and she is off the drip. However her kidney has continued to grow and her doctors, and us as well, believe it is time to remove the kidney and start dialysis. The doctors are feeling that the sooner this happens the better it will be for her.

After careful planning and a care conference with everyone involved we have scheduled for her to have her remaining kidney removed as well as a hemodialysis (HHD) and peritoneal dialysis (PD) catheter to be placed Monday Feb. 23rd at 11:30 am. This procedure will likely take 5-6 hours for both catheters to be placed. For clarification HHD is when blood is pulled out of the body to be cleaned and pushed back into the body. HHD will likely be used continuously after surgery to give her peritoneal cavity (basically her belly) time to heal before using the PD catheter. PD will fill her belly with a glucose fluid that will collect the waste in her body. The fluid will have what they call a dwell time, meaning how long it sits, and will be emptied into another bag. This will repeat as often as needed.

Most of the time spent in the hospital will be getting her fluids and levels just right as well as training Randy and I to feel comfortable enough to continue her PD at home. Once we are able to rely on PD her HHD catheter will be removed. We will do our best to keep everyone updated, but I am sure the next few weeks will prove to be busy and overwhelming at first. I have no doubt that Randy and I will adjust quickly as we did before, but it will be a new learning experience.

Sorry for the delay in the news, but this has been a rush of information for us. We went from a regular check up to surgery and dialysis rather quickly. Thank you all for your continued support and love. It has been a challenging time in our lives, but we wouldn't trade it for normal if it meant we couldn't have our Morgi Moonpie. Once again thank you all very much! I am sure everyone will have questions about Morgan's future after reading this and we will try to address those questions in our future blogs. As of now we are doing what we can to process all the new information regarding dialysis.

We feel confident in the staff at St. Luke's. We are happy to have such capable nurses, doctors, reparatory therapists, surgeons, nephrologists, social workers, and many others involved in all of her cares. We can't feel much but absolute appreciation for the St. Luke's Hospitals.