We start the month thinking, well one more weeks IV and all should be OK. Also, no TPN, and lets hope that he eats and drinks and manages to at least maintain his weight, and very importantly his electrolytes. When the line infection started, we did ask if the line could be removed. The census was, no leave it there and use it to clear the line infection. The infection was in his blood, so he needed the antibiotics by IV.
The decision is to continue the antibiotics a further week, and the one used currently once a day is to be changed to one that we can do at home. So, here we go learning another type, well Ian actually did! We felt at least it meant we were not at the hospital every afternoon. The one hour at the hospital really lasted 3. So,we would be in control! By the 5th November Ian was signed off. Matthew’s weight was the same as the previous week, this was good as he had no TPN for the week. He had eaten little bit, so it was his milk that had given him all he needed. He drinks about a litre of milk mixed with dioralyte over night, every night.
We go off to see
Blackpool illuminations, and Matthew loves it. It is the first time he has seen the lights, and his face was a picture! It was another of the “things” that we promised him when he was ill in hospital. The world seemed good!
Matthew spends the mornings at nursery, and by the 9th the 6 hourly IV’s can stop. What a relief, we can now relax a little more. The once a day one will last another week.
Bad night on the 10th Matthew’s temperature is 39.8, and we are worried. No sleep, and we decide to take him back to the hospital at 6 in the morning. The decision is made to book him into theatre and remove the Central line, and put a canula in to complete the rest of the IV antibiotics. Then after a few days, home! The test will then be, can he cope with no TPN.
Matthew’s bloods are taken the night previously and his potassium level is too low, he can’t go to theatre unless it is checked again. We await the results, which are Ok as he has been given IV fluids with potassium overnight. So, yet again we take our little boy to theatre, but at least it was not for an operation this time. Also he had his central line, so no gas mask to put him to sleep. He was actually OK about going to theatre this time. It is still awful leaving him there. So, the line will be gone and that is the end of line problems!
The worst then happens, the night of the 12th his temp spikes at 40.6. He starts to shake with the rigors, it is awful. He becomes so sick, and no one can understand why? The infection is being treated, so the infection should be almost gone. He is now so very ill, he is just lying in bed very sick. The hospital were trying to keep him on the ward rather than transferring him to HDU, we were in a single room. We did not want HDU as Matthew was so settled in this room. The staff were fantastic, and at one point we had 3 doctors and 3 nurses checking on him. His little body had already fought so much, we were so scared. We honestly thought we would end up in ICU, and the worst thought of losing him was unbearable.
On the 13th, they then find that he has an additional blood infection, the line showed he had another infection, fungal. This is classed as very serious as it can grow very quickly and is hard to clear, it can also grow in all the organs in the body and cause damage. He then has a heart scan, a liver and kidney scan and the optometrist comes to check behind his eyes. All seems to be OK, with the exception of his heart, they “think” they can see a fungal problem but will need to check again in a week.
He now needed stronger antibiotics, and for a minimum of 6 weeks. Our hearts sank, although in another way it was a relief, at least they now knew what they were treating. However, a canula was not suitable for long term IV’s, so another trip to theatre to have another Hickman line. They hoped the canula would last long enough for him to be well enough to go to theatre to have a new Hickman line in a few days. They start him on the strong antibiotics, and warn us one of them can cause kidney damage, so they will be checking his blood every 6 hours for the first few days.
On the 15th, the canula fails, and there is no access to Matthew for IV’s. The doctors had already held him down the night previously to try to put another one in, so he would have 2 access points. His viens have been used so often. He was so seriously ill, and normally he would be classed as too ill for theatre, but it was vital for him to have access for the IV’s. Everyone stressed that it was not ideal to take him to theatre, but there was no choice. We take him to theatre once again, and it is not getting any easier. It is also becoming too frequent. He comes back from theatre with a canula in his foot and a Hickman line in his groin. The great news is that they find that there is no problem with the fungus in Matthew’s heart, what a relief! Our surgeon arranged for them to have a look with an ultra sound whilst he was in theatre.
He then develops a red rash, no one can identify it. The paediatrician comes and a dermatologist comes over from
Liverpool in the evening. It is thought it is a reaction to the antibiotics. The rash starts to spread all over his body, his whole body became swollen, and he had an adult name band put on. Even his normally tiny thin wrist had swollen dramatically. We looked on helpless, and all the time we were so frightened for him. He lay in bed and did not want to even speak. We even gave him his Christmas present of Buzz Lightyear early, he was so looking forward to having it. We opened it up and he managed a small smile.
By the 17th he is much more like himself, he is showing an interest in what is going on. I had asked all my HD mums and family to send him get well cards. This may sound strange but he is ill so often that he rarely gets cards, and he loves receiving them. He loves envelopes and parcels. He gets so excited when he sees cards for him. This is the first sign of the old Matthew being back with us.
On the 18th, He has a blood transfusion that night, and we knew he would be a lot better after it. He really is much better, and is back fighting against his medicines and going on the potty. We have never been so pleased to have the fight. We honestly were worried we would never have the chance again.
By the 19th, he is back to his normal self in character, although he is still covered in red marks, at least the swelling has gone down. We breath a sigh of relief, even though we know we still have a way to go. It does not seem life threatening now. By the next day he is on the computer and being himself.
On 21st, he is doing so well and the hospital is happy. His bloods are showing all is going to plan, the antibiotics will stop tomorrow, we then have to wait and see if his temp rises? It is an agonising day. We are so happy as it is OK! His temp now needs to be Ok for 3more days then line out! The whole team want to remove it asap. They tried to save the other one, and having seen the effect, they don’t want to see this new line with an infection.
We wait the few days, and his temp is OK, so everyone feels it is safe to remove the line! When a line is put in a groin it is not expected to be left there for long, because of the position of it, it is prone to infections! When he was in theatre, they put this in as they could not get a long line in, due to the state of his veins. There is also a concern for the future, if he does need another line back in, they are almost out of places to put one. They have to go into a main vein, and they have used them all up. Let’s hope we don’t need to think about that in the future? He has lost almost a kilo in weight whilst he has been ill this time. We have to pray that he will eat and put it back on when he comes home. Home, “what a lovely word”. We all go home for the afternoon on the 22th back to the hospital in the evening.
On the 23rd, we then find out there is a problem with his liver function, shows in his blood results. Our hearts sunk, we were expecting the line to be out this week. BUT, understandably they will not take it out unless they know he is well, and that he does not need the line for yet more reasons! So, he spends the day yet again connected to pumps, need to give him IV fluids until they know his next blood results. He goes for a scan, and thank fully they cant see a big problem, just that his liver is enlarged!
We are allowed home for the day and the night of the 25th, a great time, we are starting to believe all will be OK. Matthew has to have blood tests each day, and if the liver shows signs of improving then they will make a plan to remove the line. So the waiting game, yet again. It is so good to see him in his own bed, but awful to listen to those awful dishwasher noises coming from his tummy. His output is still high, so we know we will have more to cope with in the future.
The 26th, and great news, it seems as if Matthew’s liver is getting better! We can stay at home for the weekend and then back Monday morning for bloods, and if they are OK, then the line will come out! We have a great weekend at home, although after all we have been through, it is hard to relax. Matthew is up as usual most of the night for milk drinks! However, if that is what is keeping him Ok and off the TPN, it is worth it. We do not feel that when we are up for the third time in a night though!
Hard to believe, but on the next day, Matthew is sick, and is not passing any urine. His output is really high, and his eyes are looking sunken. Back to the hospital, and connected to pumps again for 5 hours. He starts to look a lot better, but the bloods show his sodium is low and his potassium is too high. No plans for theatre as his bloods need to be perfect and he needs to be well. This is getting harder by the day. The ups and the downs, both are hard. When we have the ups, we sort of know there is likely to be a down on its way! By the 28th, his levels are OK, by the 29th his sodium is too low. Frustrated, and getting angry with everything. If his output was not so high, then these problems with the electrolytes would not be so bad. We ask to be referred to GOSH for a second gastro opinion. If we don’t eventually solve this then, we could be virtually living in the hospital again in the future. He spends the next 2 days and nights connected to IV fluids. It is becoming very hard to occupy Matthew, he is being so good. It has been months that we have been here, and he has become a games expert on the Play station and a wiz on the laptop!
On the 30th we go home for a few hours, and it is bliss. Just to sit in our own chairs and have a cup of tea! Matthew is happy too, although he keeps asking the same question “when will I be home for ever?” He has kept asking this over the months, and we have not really been able to give him an answer. Although when we thought the line was coming out, we had told him only a few more days now. We were wrong that time, so we have to be careful.
The last week two weeks in November the hospital psychologist met with us to discuss Matthew’s fear about hospital procedures. The nurses and doctors knew how scared Matthew had become of anyone coming near him to do anything apart from accessing his central line. He had been held down so often for washouts, Octeotride into subcut, trying to insert canula’s and many more “things”. He was now so frightened he was having nightmares, and also there was no chance of him staying still enough for anything to be done. As soon as his central line was removed there would be weekly blood tests, and he needed to be able to cope with them. The play nurse and the IV team spent an hour each day with all of us for the 2 weeks. They were fantastic, they “played” at getting out all the equipment, putting on the “magic” cream, and using the band on the arm to look for “wiggly lines” then the needle in for the blood to be taken. He was very apprehensive at first, and cried about the bits he did not like. They took photos of us all doing these things, and they were put in a book for him to keep. He learnt the 5 special steps to taking blood! We will know how well it really worked when he has bloods taken!
So we end November, hopeful that it will not be too long now, but we are still in hospital.